EC IV on 2nd line -- From a Newbie

AlexisW

Hello Everyone,
I'm a newbie but have been reading your posts for a while. I'd like to come out and introduce myself, see if you have any inputs regarding my (actually my father's) situation and also share some information.

My father was diagnosed esophageal cancer (stage 2, squamous cell carcinoma) in Dec. 2009. The tumor was in the mid section and about 11 cms. The doctor said it's too close to the artery for the operation. So he went through radiation and chemo. The cancer went into remission afterwards, which lasted about a year.

He didn't receive any treatment during the remission. In April 2011, we discovered bone metastases on spine No. 4 and 6. He's staged IV. He did radiation first and then chemo, Docetaxel, Cisplatin and Fluorouracil. After 4 cycles, the doctor switched him to the 2nd line treatment with Docetaxel, Cisplatin and Xeloda. He's finishing up the 2nd cycle in this 2nd line. It looks that the cancer is not progressing, which is good news. And the doctor will switch him on maintenance chemo after this cycle, which is only Xeloda.

I've reading about everything I can find throughout Dad's treatments. Here, I have some questions and also some information, which I hope other EC patients and caregivers would find useful.

Questions:
1) Is it still possible to do a surgery after what my dad has gone through? I heard some people saying an operation is impossible after radiation. But I noticed a couple of people here did the surgery after radiation. Maybe I'm crazy but I just can't rid myself of the thought that if we can find a better surgeon who can deal with the issue of tumor being too close to the artery, maybe we can remove the primary tumor without jeopardizing dad's life.

2) The doctor said the HER2 test is not useful since dad's cancer is squamous. Is it true? I remember, but can't recall exactly, reading somewhere here that the test should help with this type of cancer too. So, if it does help? When is the earliest time to do the test?

Information to share:
There is an alternative treatment in Japan, called Autologous Immune Enhancement Therapy (AIET). It's been in wide practice for over 20 years. I can't use the exact medical terms to describe it, but basically, it's about getting patient's blood out, extract cancer-fighting cells, like National Killer, multiply them like a hundred times and then inject them back into the patient's body. It's typically done in combination with Xeloda. However, Japanese don't have a strict clinical trial system on this one so it's really hard to scientifically test its efficacy. I think for patients who don't want to go through chemo, this might be a good route.

Thank you very much for reading this long post! I'm looking forward to your feedback.

Best,
Alex

chemosmoker

HER2 and more info
Alex,
HER2 has NOTHING to do with whether it's Squamous or Adenocarcinoma. The gene typing HER2 is a protein test that will reveal if HERCEPTIN will be useful as a chemo drug against the cancer or not. My cancer is Adenocarcinoma, and I am also HER2NEU or Negative. So Herceptin will do no good to my cancer. But if your dad IS HER2+ then he could use Herceptin and it is a benefit in aiding the other chemo drugs in killing the cells. Its also MORE aggressive and sensitive to hormones. That's what I know. I can be wrong and I'm not a doctor. Someone WILL correct me if I missed anything here or if I got that mixed up at all.

As for your dad being stage IV now, surgery is not a realistic option anymore. It would be of no use, as the cancer has spread and cannot be removed any longer. He SHOULD have had surgery when he was originally diagnosed at Stage II after the chemo and/or radiation.
Get a second (and third) opinion right away anyway is my advice still, even now.

The ONLY way to survive this EC, short of just extending life with constant chemo until the chemo lines quit working, is to REMOVE (resect) the cancer manually, and that's usually after pre- and post-op chemotherapy. Radiation is rather optional for some EC's. Some have radiation, some don't. That's up to the radiation oncologist, oncologist, thoracic surgeon and patient, but again, it is well past that point sadly now.

As for your question about radiation and then surgery, it can cause scar tissues that can make surgery harder to recover from, but there are MANY people here who will post that had radiation and surgery afterwards and are doing well. It is just a crying shame to read that he was caught so early, and instead of having a competent team and having his cancer removed, he was instead treated with a standard regimen of chemo and radiation, and left to wait for what is almost always inevitable without surgery, a recurrence, which seems to be the case now.

Welcome to our little hell. Always HATE to have a new member and we welcome you with lots of love and open arms. Glad you posted an hope you will continue to ask many questions. There is a lot of misinformation and really REALLY scary and negative stuff on the Internet. Here, we are honest, sometimes blunt, and hopeful and to the point of optimism.

We are a close-knit family of sorts, different from ANY other board or site I have ever seen regarding cancer. Glad you have spoken up!
Welcome.

Many more posts and information will be here shortly. Just wanted to get this out, I will post more soon for you, too.

All the best and nice of you to are for your dad, Care-giving for one of us is NO easy task, especially a Stage IV like me.
Eric

unclaw2002

chemosmoker said:

HER2 and more info
Alex,
HER2 has NOTHING to do with whether it's Squamous or Adenocarcinoma. The gene typing HER2 is a protein test that will reveal if HERCEPTIN will be useful as a chemo drug against the cancer or not. My cancer is Adenocarcinoma, and I am also HER2NEU or Negative. So Herceptin will do no good to my cancer. But if your dad IS HER2+ then he could use Herceptin and it is a benefit in aiding the other chemo drugs in killing the cells. Its also MORE aggressive and sensitive to hormones. That's what I know. I can be wrong and I'm not a doctor. Someone WILL correct me if I missed anything here or if I got that mixed up at all.

As for your dad being stage IV now, surgery is not a realistic option anymore. It would be of no use, as the cancer has spread and cannot be removed any longer. He SHOULD have had surgery when he was originally diagnosed at Stage II after the chemo and/or radiation.
Get a second (and third) opinion right away anyway is my advice still, even now.

The ONLY way to survive this EC, short of just extending life with constant chemo until the chemo lines quit working, is to REMOVE (resect) the cancer manually, and that's usually after pre- and post-op chemotherapy. Radiation is rather optional for some EC's. Some have radiation, some don't. That's up to the radiation oncologist, oncologist, thoracic surgeon and patient, but again, it is well past that point sadly now.

As for your question about radiation and then surgery, it can cause scar tissues that can make surgery harder to recover from, but there are MANY people here who will post that had radiation and surgery afterwards and are doing well. It is just a crying shame to read that he was caught so early, and instead of having a competent team and having his cancer removed, he was instead treated with a standard regimen of chemo and radiation, and left to wait for what is almost always inevitable without surgery, a recurrence, which seems to be the case now.

Welcome to our little hell. Always HATE to have a new member and we welcome you with lots of love and open arms. Glad you posted an hope you will continue to ask many questions. There is a lot of misinformation and really REALLY scary and negative stuff on the Internet. Here, we are honest, sometimes blunt, and hopeful and to the point of optimism.

We are a close-knit family of sorts, different from ANY other board or site I have ever seen regarding cancer. Glad you have spoken up!
Welcome.

Many more posts and information will be here shortly. Just wanted to get this out, I will post more soon for you, too.

All the best and nice of you to are for your dad, Care-giving for one of us is NO easy task, especially a Stage IV like me.
Eric

My understanding is that it does matter
Alex,

Welcome to the board, although I wish you did not have to join our family here. My father had adenocarcinoma esophageal cancer and I understand how difficult it must be for you.

When we were looking at this for my dad I found the below article which indicated that the HER2 Gene expression was around 15.3% for adenocarcinoma and found in less than 3.9% of squamous cell cancers. S Therefore there was limited information about whether or not the herceptin made a difference in squamous cell cancers --- but the real factor was that so few squamous patients test positive for the gene so perhaps some doctors do not feel it is worth it to test for the gene.

See study at http://www.ncbi.nlm.nih.gov/pubmed/21107094

As for your question about the surgery (And I am not a doctor) but from your post it looks like the cancer has spread from the Esophagous to the spine and other areas in your dad's body. That means the cancer has metastasized and your father is now a Stage IV. Unfortunaely, Stage IV patients are not eligible for surgery. They can seek chemo to control the cancer, and as you know radiation is limited as too much radiation is toxic to the body. Alternatively, you can seek only pain control and not continue to do chemo if it appears that the chemo no longer appears to be providing any benefit for the patient.

Good luck,
Cindy

AlexisW

Eric and Cindy,
Thank you so much for your input! This helped a lot!

But I do have another question regarding HER2. When should the patient do it? And how often? My understanding is the test involves getting a sample from the tumor, which I think can be difficult for my dad.

Alex

chemosmoker

AlexisW said:

Eric and Cindy,
Thank you so much for your input! This helped a lot!

But I do have another question regarding HER2. When should the patient do it? And how often? My understanding is the test involves getting a sample from the tumor, which I think can be difficult for my dad.

Alex

When to test
Alex,
The HER2 test should be, and today is, one of the very first tests done with the biopsy sample that they have to take to diagnose cancer in the first place. It is done ONCE only, usually when the tumor/cancer is discovered.

In my case, I was in for what was to be a routine stretch for swallowing trouble. When instead a tumor was found with the endoscopy, a biopsy was taken then, which is easy and a standard part of having the scope inside my throat already, and took a mere second more to do using the same equipment used for scoping to look, to snip a sample and send for lab testing to determine it was cancer first off, and at the same time tested for the HER2 gene. That's it.
Hope this helps.

Please continue to post and keep us updated as to the decisions being made.
We ar here to help and hold each other up, caretakers and patients.

God bless you,
Eric

sangora

chemosmoker said:

When to test
Alex,
The HER2 test should be, and today is, one of the very first tests done with the biopsy sample that they have to take to diagnose cancer in the first place. It is done ONCE only, usually when the tumor/cancer is discovered.

In my case, I was in for what was to be a routine stretch for swallowing trouble. When instead a tumor was found with the endoscopy, a biopsy was taken then, which is easy and a standard part of having the scope inside my throat already, and took a mere second more to do using the same equipment used for scoping to look, to snip a sample and send for lab testing to determine it was cancer first off, and at the same time tested for the HER2 gene. That's it.
Hope this helps.

Please continue to post and keep us updated as to the decisions being made.
We ar here to help and hold each other up, caretakers and patients.

God bless you,
Eric

Alex HER2
I am a stage IV and did not have the HER2 test for 18 months after I was diagnosed. In the beginning I was on a three drug cocktail and Herceptin was not going to be added. After my run on Xeloda (it has stopped working) they looked at Herceptin to augment my current drug Taxotere and I was negative for the protein. Bummer. They had kept tissue of my original tumor so testing required nothing of me. I guess what I am saying is that it does not seem to matter when that test is run. Sam

unclaw2002

sangora said:

Alex HER2
I am a stage IV and did not have the HER2 test for 18 months after I was diagnosed. In the beginning I was on a three drug cocktail and Herceptin was not going to be added. After my run on Xeloda (it has stopped working) they looked at Herceptin to augment my current drug Taxotere and I was negative for the protein. Bummer. They had kept tissue of my original tumor so testing required nothing of me. I guess what I am saying is that it does not seem to matter when that test is run. Sam

Alex,
When they originally
Alex,

When they originally biopsied the tumor they should have keep extra tissue and slides. They tested my dad almost 9 months after the original diagnosis, and about 14 months later for another gene. You will need unstained tissue samples (usually the testing hospital knows what they need to run the test). You may also want to request that they test for the KRAS gene mutation at the same time (this is used as an indicator by some physicians who are administering clinical trials of Erbitux).

It sounds complicated to us but the medical professionals know how to expedite these tests.

Best,
Cindy

AlexisW

chemosmoker said:

When to test
Alex,
The HER2 test should be, and today is, one of the very first tests done with the biopsy sample that they have to take to diagnose cancer in the first place. It is done ONCE only, usually when the tumor/cancer is discovered.

In my case, I was in for what was to be a routine stretch for swallowing trouble. When instead a tumor was found with the endoscopy, a biopsy was taken then, which is easy and a standard part of having the scope inside my throat already, and took a mere second more to do using the same equipment used for scoping to look, to snip a sample and send for lab testing to determine it was cancer first off, and at the same time tested for the HER2 gene. That's it.
Hope this helps.

Please continue to post and keep us updated as to the decisions being made.
We ar here to help and hold each other up, caretakers and patients.

God bless you,
Eric

Hi Eric,
Thank you so much for the update! I'll see if my dad's doctor still has his sample. As Cindy suggested, she (the doctor) isn't really big on the test right now since the cancer is squamous. Also, dad just did a gastroscopy after the 1st line and everything was smooth. So she doubted his HER2 would come up positive. I don't quite get the logic to be honest. I think HER2 tests protein so it may not necessarily show on the look of the tissues.

Please keep us posted with your treatment as well! I'm looking forward to learning more about your trial!

Best,
Alex

AlexisW

sangora said:

Alex HER2
I am a stage IV and did not have the HER2 test for 18 months after I was diagnosed. In the beginning I was on a three drug cocktail and Herceptin was not going to be added. After my run on Xeloda (it has stopped working) they looked at Herceptin to augment my current drug Taxotere and I was negative for the protein. Bummer. They had kept tissue of my original tumor so testing required nothing of me. I guess what I am saying is that it does not seem to matter when that test is run. Sam

Hi Sam,
Thank you for the information as well. But if you don't mind me asking, could you share some information about your treatment? What cocktail were you on? For how long did you take Xeloda? Was it taken with anything else? The reason I'm asking is my dad is taking Xeloda as part of his 2nd line and will soon take it alone for his maintenance. Any information about Xeloda would help us a lot!

Thank you so much!

Alex

AlexisW

unclaw2002 said:

Alex,
When they originally
Alex,

When they originally biopsied the tumor they should have keep extra tissue and slides. They tested my dad almost 9 months after the original diagnosis, and about 14 months later for another gene. You will need unstained tissue samples (usually the testing hospital knows what they need to run the test). You may also want to request that they test for the KRAS gene mutation at the same time (this is used as an indicator by some physicians who are administering clinical trials of Erbitux).

It sounds complicated to us but the medical professionals know how to expedite these tests.

Best,
Cindy

Thanks, Cindy! I'll do some more research on KRAS and talked to my father!

sangora

AlexisW said:

Hi Eric,
Thank you so much for the update! I'll see if my dad's doctor still has his sample. As Cindy suggested, she (the doctor) isn't really big on the test right now since the cancer is squamous. Also, dad just did a gastroscopy after the 1st line and everything was smooth. So she doubted his HER2 would come up positive. I don't quite get the logic to be honest. I think HER2 tests protein so it may not necessarily show on the look of the tissues.

Please keep us posted with your treatment as well! I'm looking forward to learning more about your trial!

Best,
Alex

Alexis treatment Answer
I started my treatment with 5FU via my port and a fanny pack 24/7 for two months as I remember. At the same time I got Epirubicin and Cistplatin every 21 days for three months. I started radiation in July and took Xeloda while doing radiation. This went on for a month. In mid October, I took a 10 week chemo holiday because the Epirubicin caused me some major medical problems and after radiation and at this point 6 months of chemo with no breaks I was about done in. On January 5 of 2011 I started on Xeloda 7 days on and 7 days off and did these cycles without a break for 6 months then via a CT scan it was determined ( end of June) that the Xeloda was no longer working because they saw spread to my liver again and the mass in my esophagus was much enlarged. I am now on 21 day cycles of Taxotere or as I loveingly refer to it "the drug from hell". I keep it up because it seems to be doing the job and we are getting a better handle on managing the side effects. After the first treatment I landed in the hospital for a full week. For the second dose we did some proactive prevention stuff and I only spent 8 hours in the ER. Making progress here. My next dose is in 10 days and I expect they will have the dehydration issue solved by just scheduling me back into the cancer center 2 days after my dose for a load of IV fluids. That is why I spent 8 hours in the ER. I have been lucky in that I don't seem to experience the severe side effects that many folks do and the ones I do have are well managaed by an array of other medications. I will tell you that with Xeloda, you need to be sure that your dad puts lotion on his hands and feet a couple of times a day. Xeloda is real bad about causing blistering on hands and feet. Also, I had the numming of the hands and feet at times, but that went away within a week of stopping the drug. The good thing about Xeloda is that it does not tend to mess with red and white blood cells as much as the other chemo's do. I had no problems with that. Hope this answers your questions. Sam

mario33ec

AlexisW said:

Hi Eric,
Thank you so much for the update! I'll see if my dad's doctor still has his sample. As Cindy suggested, she (the doctor) isn't really big on the test right now since the cancer is squamous. Also, dad just did a gastroscopy after the 1st line and everything was smooth. So she doubted his HER2 would come up positive. I don't quite get the logic to be honest. I think HER2 tests protein so it may not necessarily show on the look of the tissues.

Please keep us posted with your treatment as well! I'm looking forward to learning more about your trial!

Best,
Alex

On Herceptin
I am one of the lucky ones who tested postive for this-I am on my second round of chemo which includes the infusion of hereptin and cisplation as well as Xeloda pills.

I am told that the drug is more targetted and will give me more time. So, I will take any small victory I can get.

And so far no side effects...

AlexisW

sangora said:

Alexis treatment Answer
I started my treatment with 5FU via my port and a fanny pack 24/7 for two months as I remember. At the same time I got Epirubicin and Cistplatin every 21 days for three months. I started radiation in July and took Xeloda while doing radiation. This went on for a month. In mid October, I took a 10 week chemo holiday because the Epirubicin caused me some major medical problems and after radiation and at this point 6 months of chemo with no breaks I was about done in. On January 5 of 2011 I started on Xeloda 7 days on and 7 days off and did these cycles without a break for 6 months then via a CT scan it was determined ( end of June) that the Xeloda was no longer working because they saw spread to my liver again and the mass in my esophagus was much enlarged. I am now on 21 day cycles of Taxotere or as I loveingly refer to it "the drug from hell". I keep it up because it seems to be doing the job and we are getting a better handle on managing the side effects. After the first treatment I landed in the hospital for a full week. For the second dose we did some proactive prevention stuff and I only spent 8 hours in the ER. Making progress here. My next dose is in 10 days and I expect they will have the dehydration issue solved by just scheduling me back into the cancer center 2 days after my dose for a load of IV fluids. That is why I spent 8 hours in the ER. I have been lucky in that I don't seem to experience the severe side effects that many folks do and the ones I do have are well managaed by an array of other medications. I will tell you that with Xeloda, you need to be sure that your dad puts lotion on his hands and feet a couple of times a day. Xeloda is real bad about causing blistering on hands and feet. Also, I had the numming of the hands and feet at times, but that went away within a week of stopping the drug. The good thing about Xeloda is that it does not tend to mess with red and white blood cells as much as the other chemo's do. I had no problems with that. Hope this answers your questions. Sam

Sam, my father tolerated Taxotere (Docetaxel) pretty well. It only made him tired and lose appetite. Along with Cisplatin, it shrunk some lumps around his lung (although they were not medically labeled as mets) but didn't do much to curb the bone mets, so the doctor later added 5FU, which did a big damage on him but has been effective in controlling the bone mets.

My impression is that Taxotere is more effective controlling the tumors on tissues. I hope it'll great work for you!

AlexisW

mario33ec said:

On Herceptin
I am one of the lucky ones who tested postive for this-I am on my second round of chemo which includes the infusion of hereptin and cisplation as well as Xeloda pills.

I am told that the drug is more targetted and will give me more time. So, I will take any small victory I can get.

And so far no side effects...

Rock on, Mario!

chemosmoker

HER2 KNOWLEDGE and FACTS
can only share it one more time, three oncologists told us that it DOESN'T MATTER if it's Squamous Cell Carcinoma or Adnocarcinoma!
IF it tests POSITIVE for HER2 then Herceptin can target the cancer cells better along with the other chemo's being utilized.

If you test negative (and possibly NEUtral as well) Herceptin does NO GOOD wahtsoever.

IT IS THAT SIMPLE. The test should have been done the DAY they saw tunmors and biopsied them to test to see if they were cancer, not months later, or 'doesn't matter'. THAT is rediculous to me to read. MINE was tested by my GI doc the very same hour he saw the tumors he found in my esophogus, and I came back HER2- so no Herceptin useful for me. I hadn't even seen the first oncologist yet or been to a cancer center. THAT is how smart and experienced my GI doctor is. God bless him to this day.

Glad I don't have to pee red none the less, but if I WAS doing chemo and Herceptin would help, I would want it too. NOW. I digress (allot).

My experience. Hope I help someone.

Eric