Dad Diagnosed with Esophagael Adenocarcinoma Ca, HELP Please!

arjunsahu

Dear All,

I am a 23 yr old Son (Arjun Sahu) of my father (50 yrs old), who has recently been diagnosed with Esophagus Cancer. We reside in India.
My Dad kept complaining about his food getting stuck at times (not always) when he took the first bite of his food, he used to spit out the first bite, then he was able to swallow. he was complaining since past 4 months, also we showed him to an ear and throat doctor and he said there was an infection in the throat due to which he was having difficulty in swallowing, so he prescribed few medicines, obviously that did no good to him
Recently on 4th May he spat blood and passed dark stool, next day i took him to the hospital, got an endoscopy done followed by CAT, and PET Scan.
Impressions of the PET and CAT Scan:

1) FDG circumferencial wall thickening is seen in the lower esophagus involving GE junction for a distance of approximately 7.2 cms and maximum wall thickness of 14mm

2) FDG avid peri-GE junction infradiaphragmatic lymohnodes are seen, coeliac group of lymphnodes, largest measuring 11mm.

CAT SCAN Results-

1) Carcinoma of lower thorauc oesophagus involving the GO junction extending to fundus.

2) Multiple nodes in the lower perioesophageal region, GO junction, left gastric region and also in the coeliac axis.

It was indeed a devastating news for me and my family, the worst I have ever got in my lifetime, kept me shaken up and shell shocked, i didnt know how to react, and was quite numb to everything happening around me for a while.
But looking at my family broken down and being the elder son, i geared up to start the long war against the dreadful disease, i should rather say the name itself is more scary than the disease.

Without wasting much time me and my family started to do our best and consulted various well known Oncologists, Surgeons across the Globe, reading online etc etc. for suggestions and procedure to follow in order to start the treatment.

What made it worse for us was that we got mixed opinions from all the doctors we consulted and we were stuck and confused as to who to listen to or follow, whether to get a surgery done first and then go in for chemotherapy and radiation only if we find the lymph nodes positive, or perform chemo-surgery-chemo treatment

And then we heard/met about a very interesting, positive and convincing surgeon who is well known for laparoscopy and robotic surgeries also known as (Minimal Invasive Surgery), His take on my dads case after screening through the scans was-
Since the tumor is in operable condition and also the nodes that are visible in the scan can be completely removed, and also since it has not spread in any other part of the organ, or body, he told us we should get him operated Immediately without thinking or having second thoughts. and after that wait for the biopsy report of the specimen, if the nodes are infected then go in for adjuvant chemo-radiation therapy.
The surgery included removal of the esophagus and upper part of the stomach, with stretching the stomach upwards acting as a new food pipe (Esophagectomy)
The surgery went off very well, but as we had expected, to our disappointment the 3 out of 12 nodes were positive after the histopathology report was submitted to us.

Biopsy Report:

1) Adenocarcinoma Grade II of GE junction & proximal stomach.
2) No myoinvasion
3) Resection Margins free
4) Lymph Node status 03/12

The surgery was performed on 12th May 2011 and today is 30th of May 2011, my father is on his way to recovery from the surgery, he has apparently lost 9 kgs in 15-20 days. he was being fed from the Jejunal Tube only liquids though, Now that the inside has been healed, he has started eating by his mouth but ofcourse less quantity and semi-solid food.
we have an appointment with Indias best Oncologists on the 10th of June (completing 4 four weeks since surgery) and take the chemotherapy protocol/formula and start with the treatment thereby.

Am sorry for making you all read so much in detail, i really feel helpless and in dire need of help, il cut it short now,
just have few questions that keeps pondering in my head and i feel so lost if i think about them, so here they are-

1) How many Cycles can my dad undergo at a stretch (i mean after 6 cycles are over) and if the chemo has not responded well, or may be it has and the cancer cells comes back again how many times i can have him undergo the chemo process?

2) how does chemotherapy respond to adenocarcinoma cells?

3) Is radiation required along with chemotherapy?

4) what are the precautions i should take when my dad will be going through chemotherapy?

5) what all should i be prepared for in the future as my dad undergoes the treatment?

6) What precautions should i take inorder to avoid the side effects of chemo?

Actually I am quite sure i have atleast 100 questions to ask and as i am writing this, my head feels blank right now, probably bcuz its late night here and i need lot of catching up to do where sleep is concerned.
I keep my fingers crossed and just pray that i dont regret any decision i take while fighting it out with him, for him and for us.
I believe it also comes down to prayers, luck and destiny, good wishes, power of positivity for every human being alive and who are going through this mental and physical ordeal

Any Help and important information for helping me and my family to help to make my dad cancer free and last but not least save his life. i love him a lot and i dont want to lose him.
Thank you All, God bless
Peace!

Unknown

This comment has been removed by the Moderator

paul61

Your Dad's case is a bit similar to mine
Arjun,

Welcome to our group. I am sorry you found us under difficult circumstances for your Dad and your family. I think my history with esophageal cancer may be similar to your Dad’s. Like your Dad, had surgery prior to any chemotherapy or radiation therapy. In my case they originally thought I was in Stage I because the initial diagnostic tests did not show any lymph node involvement. Unfortunately for me, the post surgical pathology showed cancer cells in one of the lymph nodes removed, so I required adjuvant chemotherapy.

Your Dad was more fortunate than me in the respect that he had a minimally invasive surgery while I had an Ivor Lewis surgical approach which is much more invasive and has a longer recovery period. But, as I am sure your Dad will tell you, all esophagectomies are major surgery and take significant recovery periods.

Like your Dad I lost quite a bit of weight after the surgery.

I am glad to see your Dad has a J-tube. That will be very helpful to him in maintaining the caloric intake he will require to complete his recovery from surgery and complete his adjuvant chemotherapy. Even if you Dad reaches a point where he does not need the support of the J-tube as he completes his recovery from surgery I would recommend he discuss keeping the tube in through chemotherapy with his oncologist. Chemotherapy can present its own issues with eating and digestion.

But let me get to your questions:

1) How many Cycles can my dad undergo at a stretch (i mean after 6 cycles are over) and if the chemo has not responded well, or may be it has and the cancer cells comes back again how many times i can have him undergo the chemo process?

How much chemotherapy one can undergo is a function of the person’s health profile, the drugs used, and that person’s personal response to the drugs.

I can tell you in my case I had six rounds of Cisplatin, Epirubicin, and 5 FU. The Cisplatin and Epirubicin were given via infusion every 21 days. The 5 FU was given via a portable IV pump continuously over an 18 week period. I had a CT scan after three infusion cycles to evaluate my response to the chemotherapy and a CT scan at the end of the 18 weeks. I was fortunate enough to be found “in remission” with no evidence of disease in subsequent CT scans.

Your Dad had clear margins after surgery and the three affected nodes have been removed so one can be hopeful the follow up chemo will be successful in placing him in remission as well.

2) how does chemotherapy respond to adenocarcinoma cells?

Chemotherapy is designed to kill fast reproducing cells. Ideally any adenocarcinoma cells remaining are killed. Unfortunately the cells in the lining of the digestive system are also fast reproducing cells so there will be some side effects. Your Dad’s oncologist will have medications to deal with the side effects. The side effects I had were some nausea and diarrhea. My oncologist prescribed medications that minimized those issues.

3) Is radiation required along with chemotherapy?

I did not have radiation therapy. The cancerous tumor and affected lymph nodes were removed at that point so there was really nothing to target and irradiate.

4) what are the precautions i should take when my dad will be going through chemotherapy?

Your Dad’s immune system will be weakened by the chemotherapy. I would avoid large groups of people were he could be exposed to various germs.

Many of the chemotherapy drugs will cause dehydration. Be sure your family supporting your Dad’s knows the signs of dehydration (nausea, dizziness, fatigue, etc) and if necessary take your Dad in for IV hydration. It is hard to drink enough liquid on a daily basis to maintain enough hydration. I found that if I went into my oncologist’s office for IV hydration two days after each IV infusion I had an easier time with the side effects.

Be sure your Dad takes his anti-nausea medications even if he does not feel nauseous. It is easier to stay ahead of nausea if you don’t wait until it occurs to take your medication. Some people on this site have found it helpful to take their morning nausea medication before they get out of bed and allow it an hour of so to begin working before they get up.

Tell your Dad not to eat his favorite foods during chemotherapy, many of the drugs change the taste of food and after chemotherapy is finished he will tend to associate how those foods tasted during chemotherapy and may not be able to enjoy them after chemotherapy. I waited until a month after I finished chemotherapy and then rewarded myself with my favorite foods.

Suggest your Dad eat soft foods that are high in calories. Be careful of foods that are high in sugar content or simple carbohydrates. One of the common issues for people who have had gastric surgery is “Dumping Syndrome”.

I have included some references to helpful documents in this area below:

http://www.upmc.com/HealthAtoZ/patienteducation/Documents/Esophagectomy.pdf

http://www.upmc.com/HealthAtoZ/patienteducation/Documents/DumpingSynDiet.pdf

5) what all should i be prepared for in the future as my dad undergoes the treatment?

Your Dad’s appearance will change as he goes through chemotherapy. He may lose his hair, he will probably lose some weight, and he will feel and look frail. These changes are temporary and will change after he finishes his treatment. He will probably not be particularly interested in eating. You should encourage him to eat but try not to nag him about how much he eats. Continually telling a patient who is undergoing chemotherapy that “ you have to eat or you will lose too much weight” will just raise that person’s anxiety level. There will be some days when getting out of bed and to his favorite chair is all he can do that day. I found that when I received chemo in three week cycles the first week after an infusion was the worst, the next week I felt slightly better, and the third week I felt almost normal again. Then it was back to the oncologist’s office for another infusion. After a few cycles I knew what to expect and the side effects did not concern me as much. Chemotherapy has a cumulative effect so the last three cycles were more difficult than the first three but the side effects were manageable with appropriate medications.

6) What precautions should i take in order to avoid the side effects of chemo?

Sherri has given some excellent advice in her post above. Hydration is important. Taking nausea medication proactively is important. Keeping a log of side effects and how your Dad’s feels generally each day will help your oncologist manage your Dad’s side effects.

It sounds like your Dad has the support of a loving family and access to excellent medical care. He is very fortunate.

I will be hoping for a positive outcome from his tests and treatment plan.

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
6/21/2010 CT Scan NED
3/14/2011 CT Scan NED

Life may not be the party we hoped for, but while we are here we might as well dance!

Alaska_Kim

Similar to my husband
Hi Arjun,

Your dad's diagnosis is also similar to my husband. He was initially staged T1b and did not have pre-op chemotherapy or radiation before having MIE surgery April 7. Unfortunately, pathology report came back with 5 of 12 lymph nodes testing positive. He just completed his first of four chemotherapy rounds. The Epirubicin and Oxaliplatin were IV infusions and will be cycled 3 weeks. He is also taking Xeloda by mouth two weeks on and one week off. So far, he has had few side effects such as reactions to cold from the Oxaliplatin and a few instances of watery eyes and drippy nose. We are preparing for the cumulative effect though and will be watching for side effects closely after the next round. He also still has his J tube and will keep it until the chemo is over. He started having problems with food getting stuck around week four after surgery and had his throat dilated a week ago with another dilation scheduled next Monday. He had to go back to a liquid diet so we use the J tube at night to keep him from losing weight. It looks like you have received excellent answers to your questions. I learn something new on a daily basis by reading about others experiences on this site (the suggestion to avoid favorite foods during treatment in the event tastes change is something I would have never thought of). Wishing your dad all my best in his recovery.

arjunsahu

paul61 said:

Your Dad's case is a bit similar to mine
Arjun,

Welcome to our group. I am sorry you found us under difficult circumstances for your Dad and your family. I think my history with esophageal cancer may be similar to your Dad’s. Like your Dad, had surgery prior to any chemotherapy or radiation therapy. In my case they originally thought I was in Stage I because the initial diagnostic tests did not show any lymph node involvement. Unfortunately for me, the post surgical pathology showed cancer cells in one of the lymph nodes removed, so I required adjuvant chemotherapy.

Your Dad was more fortunate than me in the respect that he had a minimally invasive surgery while I had an Ivor Lewis surgical approach which is much more invasive and has a longer recovery period. But, as I am sure your Dad will tell you, all esophagectomies are major surgery and take significant recovery periods.

Like your Dad I lost quite a bit of weight after the surgery.

I am glad to see your Dad has a J-tube. That will be very helpful to him in maintaining the caloric intake he will require to complete his recovery from surgery and complete his adjuvant chemotherapy. Even if you Dad reaches a point where he does not need the support of the J-tube as he completes his recovery from surgery I would recommend he discuss keeping the tube in through chemotherapy with his oncologist. Chemotherapy can present its own issues with eating and digestion.

But let me get to your questions:

1) How many Cycles can my dad undergo at a stretch (i mean after 6 cycles are over) and if the chemo has not responded well, or may be it has and the cancer cells comes back again how many times i can have him undergo the chemo process?

How much chemotherapy one can undergo is a function of the person’s health profile, the drugs used, and that person’s personal response to the drugs.

I can tell you in my case I had six rounds of Cisplatin, Epirubicin, and 5 FU. The Cisplatin and Epirubicin were given via infusion every 21 days. The 5 FU was given via a portable IV pump continuously over an 18 week period. I had a CT scan after three infusion cycles to evaluate my response to the chemotherapy and a CT scan at the end of the 18 weeks. I was fortunate enough to be found “in remission” with no evidence of disease in subsequent CT scans.

Your Dad had clear margins after surgery and the three affected nodes have been removed so one can be hopeful the follow up chemo will be successful in placing him in remission as well.

2) how does chemotherapy respond to adenocarcinoma cells?

Chemotherapy is designed to kill fast reproducing cells. Ideally any adenocarcinoma cells remaining are killed. Unfortunately the cells in the lining of the digestive system are also fast reproducing cells so there will be some side effects. Your Dad’s oncologist will have medications to deal with the side effects. The side effects I had were some nausea and diarrhea. My oncologist prescribed medications that minimized those issues.

3) Is radiation required along with chemotherapy?

I did not have radiation therapy. The cancerous tumor and affected lymph nodes were removed at that point so there was really nothing to target and irradiate.

4) what are the precautions i should take when my dad will be going through chemotherapy?

Your Dad’s immune system will be weakened by the chemotherapy. I would avoid large groups of people were he could be exposed to various germs.

Many of the chemotherapy drugs will cause dehydration. Be sure your family supporting your Dad’s knows the signs of dehydration (nausea, dizziness, fatigue, etc) and if necessary take your Dad in for IV hydration. It is hard to drink enough liquid on a daily basis to maintain enough hydration. I found that if I went into my oncologist’s office for IV hydration two days after each IV infusion I had an easier time with the side effects.

Be sure your Dad takes his anti-nausea medications even if he does not feel nauseous. It is easier to stay ahead of nausea if you don’t wait until it occurs to take your medication. Some people on this site have found it helpful to take their morning nausea medication before they get out of bed and allow it an hour of so to begin working before they get up.

Tell your Dad not to eat his favorite foods during chemotherapy, many of the drugs change the taste of food and after chemotherapy is finished he will tend to associate how those foods tasted during chemotherapy and may not be able to enjoy them after chemotherapy. I waited until a month after I finished chemotherapy and then rewarded myself with my favorite foods.

Suggest your Dad eat soft foods that are high in calories. Be careful of foods that are high in sugar content or simple carbohydrates. One of the common issues for people who have had gastric surgery is “Dumping Syndrome”.

I have included some references to helpful documents in this area below:

http://www.upmc.com/HealthAtoZ/patienteducation/Documents/Esophagectomy.pdf

http://www.upmc.com/HealthAtoZ/patienteducation/Documents/DumpingSynDiet.pdf

5) what all should i be prepared for in the future as my dad undergoes the treatment?

Your Dad’s appearance will change as he goes through chemotherapy. He may lose his hair, he will probably lose some weight, and he will feel and look frail. These changes are temporary and will change after he finishes his treatment. He will probably not be particularly interested in eating. You should encourage him to eat but try not to nag him about how much he eats. Continually telling a patient who is undergoing chemotherapy that “ you have to eat or you will lose too much weight” will just raise that person’s anxiety level. There will be some days when getting out of bed and to his favorite chair is all he can do that day. I found that when I received chemo in three week cycles the first week after an infusion was the worst, the next week I felt slightly better, and the third week I felt almost normal again. Then it was back to the oncologist’s office for another infusion. After a few cycles I knew what to expect and the side effects did not concern me as much. Chemotherapy has a cumulative effect so the last three cycles were more difficult than the first three but the side effects were manageable with appropriate medications.

6) What precautions should i take in order to avoid the side effects of chemo?

Sherri has given some excellent advice in her post above. Hydration is important. Taking nausea medication proactively is important. Keeping a log of side effects and how your Dad’s feels generally each day will help your oncologist manage your Dad’s side effects.

It sounds like your Dad has the support of a loving family and access to excellent medical care. He is very fortunate.

I will be hoping for a positive outcome from his tests and treatment plan.

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
6/21/2010 CT Scan NED
3/14/2011 CT Scan NED

Life may not be the party we hoped for, but while we are here we might as well dance!

hey paul,
thank you so much
hey paul,
thank you so much for the information....
makes me calm down and think hey its not that bad after could have been worse...
am pleased to know you have been fighting off well and have the correct attitude towards it

i have a query since there are so many options when deciding the chemo-regimen, on what basis do the doctors decide to put someone(my dad in this case) under that particular dose. and how do we know if that its the right regimen for this particular type and case.

my dads oncologists have suggested him a combination of paclitaxel/cisplatin/5-fu in the gap of 3 weeks between cycles.
i have read most of the people have under gone epirubin/cisplatin/5-fu or epirubin/oxaliplatin/xeloda (oral) and so on...
but the last two were common in this type of cancer..
my dad starts his chemo (1st cycle) from saturday...i just want to be sure that the regimen advised is familiar and has a tendency to perform on my dads body cells. or if i should consider any other regimen...
im really worried about it, as i want to give him the best of the best treatment. without compromising on anything....price is not an issue...
so please let me know whats your take on it thanks a ton

arjunsahu

unknown said:

This comment has been removed by the Moderator

hey bailey
hey bailey,
firstly thanks for your response, any information i get on here from all of you is of great help

we live in india, as you had advised,I had phoned Dr. James clinic and had a talk with his assistant, he told me that the doctor is a surgeon and not an onco-surgeon, and there is a team of oncologist that administer patients there and i"ll have to be lucky to get them on the phone.
its kind of hard to get in touch with doctors there and also the time difference doesnt help.
i also called up Memorial Sloan Kettering and their first thing they asked me was to deposit $2000 via credit card to be able to speak to an oncologists there...anyway
we have an appointment day after with the indias well known oncologist and thereafter my dad will be undergoing his first cycle of chemo on saturday...
i am just worried about the regimen that the doc is going to put him on, as i have read about so many different kind and types of regimen for esophagus carcinoma (platinol-aq, taxols, taxodere etc etc.),i just dont know how to confirm if that one is of any effect, i dont want to lose out on time and regret later.
so just to make sure he is advised with right regimen...my question to all is- is there any way to check if the regimen that will be advised to him is correct and should be of any effect to him.

thank you once again
God Bless

paul61

arjunsahu said:

hey paul,
thank you so much
hey paul,
thank you so much for the information....
makes me calm down and think hey its not that bad after could have been worse...
am pleased to know you have been fighting off well and have the correct attitude towards it

i have a query since there are so many options when deciding the chemo-regimen, on what basis do the doctors decide to put someone(my dad in this case) under that particular dose. and how do we know if that its the right regimen for this particular type and case.

my dads oncologists have suggested him a combination of paclitaxel/cisplatin/5-fu in the gap of 3 weeks between cycles.
i have read most of the people have under gone epirubin/cisplatin/5-fu or epirubin/oxaliplatin/xeloda (oral) and so on...
but the last two were common in this type of cancer..
my dad starts his chemo (1st cycle) from saturday...i just want to be sure that the regimen advised is familiar and has a tendency to perform on my dads body cells. or if i should consider any other regimen...
im really worried about it, as i want to give him the best of the best treatment. without compromising on anything....price is not an issue...
so please let me know whats your take on it thanks a ton

The chemotherapy cocktail depends on the oncologist and patient
Arjun,

There are standard chemotherapy protocols established by the practice governance bodies to which most oncologists subscribe. They typically include a cocktail of three drugs that include one drug to kill fast reproducing cells, one drug to disrupt the blood supply process to abnormal growing cells, and one drug to disrupt the DNA replication process for cancer cells.

New drugs that have come into the medical community recently are targeted at certain gene receptors found on cancer cells.

Here is an excellent resource that discusses the approach for Esophageal Cancer:

http://medicineworld.org/cancer/gi/esophageal/treatment.html

The dosage for most chemotherapy drugs is determined by the height and weight of the patient and the patient’s overall health profile.

There are some companies in the US that suggest they can anticipate the potential effectiveness of some chemotherapy drugs by testing a sample of the tumor cells against a range of chemotherapy agents. An example of such a company is Rational Therapeutics:

http://www.rational-t.com/

Typically most oncologists perform tests and scans after three cycles to gauge the effectiveness of the defined protocol. If things aren’t proceeding as hoped changes can be made.

I hope things go well for your Dad.

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
6/21/2010 CT Scan NED
3/14/2011 CT Scan NED

Life may not be the party we hoped for, but while we are here we might as well dance!