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Binkie22 · December 2014

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JKGulliver · December 2014

Be aggressive

Like your husband, my husband was a "responder", meaning that chemo dramatically reduced his tumors. This means anything over 50%. You don't say what stage your husband is in, but from your description, it sounds like Stage 3 or 4. When we learned of my husband's condition, we started searching the scholarly literature for insight about his chances of survival, given various circumstances. Honestly, we were shocked at how difficult it is to find actionable information. One question we had is the chances of survival for responders versus non-responders to chemo. We found nothing. This means there is no accessible data or analysis that will help you decide if it is worthwhile to seek progressively aggressive treatment, given successful results with chemo.

My husband was originally diagnosed with Stage 3 EC. It was later de-staged to Stage 2. He had 12 weeks of chemo, 6 weeks of radiation and finally, a robot assisted esophagectomy. That was in September, 2013. So far, he is NED - No Evidence Of Disease. But this is meaningless. We understand that the annals of treatment history are chuck full of people who responded well to chemo, only to relapse within 2-4 years. If this happens to us, we are taking whatever time we've gained through treatment. If we have longer together, all the better.

You've been told your husband is not a candidate for surgery because this is the protocol, i.e. the standard path. You need to find an oncologist who is open to radiation and surgery, if this is what you want. You also need to check with your health insurance to make sure it is covered. It isn't always. Today, my husband says he is glad he underwent aggressive treatment, because he would always wonder if it would have made a difference, should the cancer return. He's had to develop a whole different relationship to food and beverages of all kinds. This is doable.

Good luck to you and your family. It's a long, heart wrenching path. This is a wonderful, helpful community. You are doing the right thing by asking the questions you are.

Deathorglory · December 2014

Sorry to hear

Hello,

When I was diagnosed with a recurrence in a lung I was told surgery and radiation weren't options because it was metastatic. I was told to get my affairs in order sooner rather than later and put on a chemo regimen (Folfox). I was 40 the first time around and 44 at the time of the recurrence. It's standard to treat stage IV as incurable and to offer pallative care and clinical trials. I was fortunate to be HER2+ and it was just a couple of months after herceptin was approved for EC in the US. I was also REALLY fortunate to have a REALLY good response to the herceptin. I'm over 3 years since the recurrence, and am still testing completely clean and still getting the herceptin every Tuesday. While it sucks that your husband it getting hit with this at such a young age, it's better to be young and strong for this fight.

Wishing you the best results,

Ed

Sandy B · January 2015

Deathorglory said:
Sorry to hear
Hello,

When I was diagnosed with a recurrence in a lung I was told surgery and radiation weren't options because it was metastatic. I was told to get my affairs in order sooner rather than later and put on a chemo regimen (Folfox). I was 40 the first time around and 44 at the time of the recurrence. It's standard to treat stage IV as incurable and to offer pallative care and clinical trials. I was fortunate to be HER2+ and it was just a couple of months after herceptin was approved for EC in the US. I was also REALLY fortunate to have a REALLY good response to the herceptin. I'm over 3 years since the recurrence, and am still testing completely clean and still getting the herceptin every Tuesday. While it sucks that your husband it getting hit with this at such a young age, it's better to be young and strong for this fight.

Wishing you the best results,

Ed

What is Herceptin

Hi my husband has oesophageal cancer. Don't know what stage gave never been told so will ask. He has had 1 round of chemo and 1 round of radiotherapy followed by an op to insert a stent (22.5cm). My question is what is " Herceptin".

Deathorglory · January 2015

Sandy B said:
What is Herceptin
Hi my husband has oesophageal cancer. Don't know what stage gave never been told so will ask. He has had 1 round of chemo and 1 round of radiotherapy followed by an op to insert a stent (22.5cm). My question is what is " Herceptin".

Hello Sandy

Hello Sandy,

Herceptin started for use on HER+ breast cancer. It has had good success with that. It was approved a few years ago in the US for HER+ metastatic gastroesophageal junction cancers. It makes the primary chemo more effective by targeting the cancer cells more accurately. It may also have benefits by reducing the chances of a recurrence as a maintainence drug. (It does with breast cancer, unproven yet with EC.) The use of herceptin is restricted to cases where the cancer is HER+. You'll have to talk to your docs and ask about being tested. It's a mixed bag. If you're HER+, it means you have a particularly aggressive cancer, but there's a potentially effective treatment. I'm just giving a very rough idea here, you should definitely talk to your docs about it--your spelling of "oesophageal" makes me think we're from different countries and I don't want to give you information that isn't helpful where you are.

Hope all works out well,

Ed

mardigras · January 2015

Positive experience

Hello Binkie,

I am so sorry that you find yourself here, but welcome anyway.

You will find a wealth of help and information on this site.

My hudband was diagnosed with ardenocarcinoma in 2011 and was stage 3. He had 3 rounds of chemo over 10 weeks and then a month break to help him recover before the op. He was not a candidate for micro surgery as the tumour was too large, so he had the Ivor Lewis op.

Almost 3 years on he is doing really well. I won't pretend that the op was a walk in the park, but he got through it and he is almost 70. He will always be on the thin side as the new geography of his body makes putting on weight very difficult, but the upside is that he can eat almost anything he wants. There are a few minor things, but he leads a virtually normal life now.

If I can help you any further, please contact me and I will be happy to answer any questions.

Good luck to you all on this difficult journey.

Kindest regards

Marci

Binkie22 · January 2015

mardigras said:
Positive experience
Hello Binkie,

I am so sorry that you find yourself here, but welcome anyway.

You will find a wealth of help and information on this site.

My hudband was diagnosed with ardenocarcinoma in 2011 and was stage 3. He had 3 rounds of chemo over 10 weeks and then a month break to help him recover before the op. He was not a candidate for micro surgery as the tumour was too large, so he had the Ivor Lewis op.

Almost 3 years on he is doing really well. I won't pretend that the op was a walk in the park, but he got through it and he is almost 70. He will always be on the thin side as the new geography of his body makes putting on weight very difficult, but the upside is that he can eat almost anything he wants. There are a few minor things, but he leads a virtually normal life now.

If I can help you any further, please contact me and I will be happy to answer any questions.

Good luck to you all on this difficult journey.

Kindest regards

Marci

Thanks Marci, it really does

Thanks Marci, it really does help to hear positive stories from survivors so thank you so much for replying. Currently we are having a break from all IV and oral chemo as he's not doing very well with the EOX therapy, has had 5 rounds with a good response on CT so after this break and another scan will probably go on a maintenance dose of oral chemo and hopefully have a good period of remission. We are in New Zealand and have limited options regarding surgery and herceptin. Surgery is not an option as it has spread beyond the oesophagus and herceptin is not funded here. We have to decide whether we want him to get tested then be faced with having to pay $80-100,000 a year for the herceptin if he's a suitable candidate. Big decisions to make in the next couple of weeks.

mardigras · January 2015

Binkie22 said:
Thanks Marci, it really does
Thanks Marci, it really does help to hear positive stories from survivors so thank you so much for replying. Currently we are having a break from all IV and oral chemo as he's not doing very well with the EOX therapy, has had 5 rounds with a good response on CT so after this break and another scan will probably go on a maintenance dose of oral chemo and hopefully have a good period of remission. We are in New Zealand and have limited options regarding surgery and herceptin. Surgery is not an option as it has spread beyond the oesophagus and herceptin is not funded here. We have to decide whether we want him to get tested then be faced with having to pay $80-100,000 a year for the herceptin if he's a suitable candidate. Big decisions to make in the next couple of weeks.

Hi Binkie

Hello again,

I just wonder if it would be worth asking the UpperGI unit at Cambridge University hospital for advice.

I feel sure you would be able to email them and ask what your next step should be. Perhaps the cost of herceptin is lower in other parts of the world. Has your husband been tested for the gene.

Also, I got a lot of help from Mr James Lukeditc in the USA. I emailed him and he was very helpful. He is the pioneer of EC micro surgery and is first class.

If I can help in any way, please let me know.

I wish you all the luck love and prayers in the world for your husband and your little family.

Hugs,

Marci

mardigras · January 2015

Binkie22 said:
Thanks Marci, it really does
Thanks Marci, it really does help to hear positive stories from survivors so thank you so much for replying. Currently we are having a break from all IV and oral chemo as he's not doing very well with the EOX therapy, has had 5 rounds with a good response on CT so after this break and another scan will probably go on a maintenance dose of oral chemo and hopefully have a good period of remission. We are in New Zealand and have limited options regarding surgery and herceptin. Surgery is not an option as it has spread beyond the oesophagus and herceptin is not funded here. We have to decide whether we want him to get tested then be faced with having to pay $80-100,000 a year for the herceptin if he's a suitable candidate. Big decisions to make in the next couple of weeks.

Sorry, forgot to say

CAMBRIDGE IN THE UK

Binkie22 · January 2015

mardigras said:
Sorry, forgot to say
CAMBRIDGE IN THE UK

thanks Marci
I have been busy

thanks Marci

I have been busy doing lots of research and have contacted a professor in Auckland (major city about 3 hours from us) who specialises in gastric surgeries. He has agreed to review Anthony's CT scans and medical information to see if there is anything else he can offer us, he said that he has a weekly multidiscilinary meeting so is happy to talk about Anthony with some other doctors too, I know he may not be able to help us but at least I feel like I'm doing all I can and we haven't sought a second opinion yet so will be interesting to see what he says. Anthony hasn't been tested for the HER gene yet but we will be seeing our oncologist this week after a CT scan tomorrow to discuss things, wish us luck! He is much improved now chemo has stopped, feeling more energetic and able to do a bit more which is wonderful.

mardigras · January 2015

Binkie22 said:
thanks Marci
I have been busy
thanks Marci

I have been busy doing lots of research and have contacted a professor in Auckland (major city about 3 hours from us) who specialises in gastric surgeries. He has agreed to review Anthony's CT scans and medical information to see if there is anything else he can offer us, he said that he has a weekly multidiscilinary meeting so is happy to talk about Anthony with some other doctors too, I know he may not be able to help us but at least I feel like I'm doing all I can and we haven't sought a second opinion yet so will be interesting to see what he says. Anthony hasn't been tested for the HER gene yet but we will be seeing our oncologist this week after a CT scan tomorrow to discuss things, wish us luck! He is much improved now chemo has stopped, feeling more energetic and able to do a bit more which is wonderful.

All the luck in the worldf

Hello again Binkie,

Oh I wish you all the luck in the world. I know how it feels to be in the situation of grasping for straws in a world where everything seems so upside down and too technical to understand.

I am so glad that your husband is feeling a much better. Chemo really puts some patients through the wringer.

Your decision to get a second opinion and from someone with a wealth of experience is such a good move. If anyone can help you, he can, and the more doctors that he shares your husbsnd's story with the better. It isn't all science is it. Sometimes a bright young doctor can come up with a solution that has been missed by others.

Good luck too with the CT scan. I hope the news is good.

Do try to keep your husband on a good diet with lots of vitamin c, anti-oxidents and all those cancer busting foods. They may not cure him, but they will keep him strong enough to cope with the medications. Perhaps you could also ask your professor about clinical trials. I'm not sure, but wouldn't any drugs be free on a trial?

Keep on with your research whenever you can, it really does pay off.

I'm praying for you.

Hugs,

Marci

Binkie22 · January 2015

mardigras said:
All the luck in the worldf
Hello again Binkie,

Oh I wish you all the luck in the world. I know how it feels to be in the situation of grasping for straws in a world where everything seems so upside down and too technical to understand.

I am so glad that your husband is feeling a much better. Chemo really puts some patients through the wringer.

Your decision to get a second opinion and from someone with a wealth of experience is such a good move. If anyone can help you, he can, and the more doctors that he shares your husbsnd's story with the better. It isn't all science is it. Sometimes a bright young doctor can come up with a solution that has been missed by others.

Good luck too with the CT scan. I hope the news is good.

Do try to keep your husband on a good diet with lots of vitamin c, anti-oxidents and all those cancer busting foods. They may not cure him, but they will keep him strong enough to cope with the medications. Perhaps you could also ask your professor about clinical trials. I'm not sure, but wouldn't any drugs be free on a trial?

Keep on with your research whenever you can, it really does pay off.

I'm praying for you.

Hugs,

Marci

We have had a bit of a

We have had a bit of a rough day today, had a CT yesterday and saw oncologist today. Unfortunately there has been some growth in the areas of concern, this is after being off chemo for only 3 weeks. So next week he will start a different chemo to see if they can hold the cancer at bay for a little longer. We had really hoped and prayed for a longer period of remission but obviously it's fairly aggressive. Hard to accept that he has to begin chemo again, he is only just starting to feel better in himself, able to talk, get out and enjoy kids. Chemo might make you live longer but it's no good if there's no quality. The doctor asked us if we had anything we would like to do, our one aim was to take the kids to disneyland (we have been saving for 10years) but she said it would be impossible to go to the states while ill and we wouldn't get travel insurance so there's that dream dashed. My poor husband asked her about time frames and she said we are looking at months not years. It has really hit him hard today, it's horrible to see someone you love trying to process that they're going to die and not be around to see their children grow up. I just feel lost and wish I could do more for him.

mardigras · January 2015

Binkie22 said:

We have had a bit of a

We have had a bit of a rough day today, had a CT yesterday and saw oncologist today. Unfortunately there has been some growth in the areas of concern, this is after being off chemo for only 3 weeks. So next week he will start a different chemo to see if they can hold the cancer at bay for a little longer. We had really hoped and prayed for a longer period of remission but obviously it's fairly aggressive. Hard to accept that he has to begin chemo again, he is only just starting to feel better in himself, able to talk, get out and enjoy kids. Chemo might make you live longer but it's no good if there's no quality. The doctor asked us if we had anything we would like to do, our one aim was to take the kids to disneyland (we have been saving for 10years) but she said it would be impossible to go to the states while ill and we wouldn't get travel insurance so there's that dream dashed. My poor husband asked her about time frames and she said we are looking at months not years. It has really hit him hard today, it's horrible to see someone you love trying to process that they're going to die and not be around to see their children grow up. I just feel lost and wish I could do more for him.

A prayer for you.

Hello Binkie,

I can't tell you how sorry I am to hear your heartbreaking news and completely understand that you must be feeling lost and alone.

Did you have that second opinion yet?

You can perhaps see if there is a clinical trial that might be suitable for your husband, but most of all don't give up hope. You never know what can be achieved if you keep on trying.

I am praying for a miracle for you.

God bless you all.

Hugs and prayers,

Marci

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