My Mom's battle with Stage III EC

Jdlang2166

Hello,
My name if Jennifer and I am the daughter of a fabulous and brave woman who was recently diagnosed with EC T4 NI Mx Siewart Type II Esophageal Carcinoma (Staged as III) on 4/18/11. Interestingly, my mom's cancer has mainly formed in her stomach, beginning at the GE Junction and encompassing 95% of her stomach. Over the last 6 months we had noticed a wt loss (25 pounds) and attributed the changes to her recent ‘flu bug’ and colds; she never reported any difficulty swallowing although reported her stomach filled quickly after each meal. Her symptoms started as a bleeding ulcer, due to high volumes of blood in both bowel and vomit. On 4/17/11 she was taken to the ER placed on ICU and provided blood transfusions and given an endoscopy the following day and diagnosed with cancer. Her tumor is large and deep, affecting local lymph nodes. My mother is 64 yr old, non-smoker and non-drinker and overall healthy lifestyle. The surgical oncologist does not feel she is a candidate for surgery at this time and no additional discussion have taken place. Her oncologist and radiation oncologist are giving her a 'fighting chance' of beating the cancer although since the beginning of her chemoradiation treatments her fight has been challenged.
She started chemoradiation treatment on 5/9/11 and is expected for a six week cycle. She had initially had a reaction to Taxol, which was replaced with Taxotere. She started, taxotere, citplatin, and started an infusion 5FU pump the following day. Prior to beginning chemoradiation she was diagnosed with anemia, and need weekly iron treatments for support, thus, her schedule of daily radiation, weekly Iron, tri-weekly chemo, along with 24/7 5FU Pump. Over the course the first three days of treatment, she developed a “Thrush” by Saturday and was hospitalized on Sunday, 5/16/11. She has since remained in the hospital, with minimal signs of improved white blood cell count, reporting levels at 1000, and limited ‘baby white blood cell’ or neutrophil improvements if any which may indicate an infection in the bone marrow. Due to her high risk of infection the oncologist and internist, have placed her on a Neutropenic care, thus limited contact and masks etc. The plans are for today to receive a CT scan and two units of blood. She remains highly sedated and in a way ‘unconscious’ for the majority of the time. I continue to pray this is not a life threatening chemo treatment but have minimal input that things are improving.
Our family is quite small, raised in MN, with only my dad, sister, and I. My sister lives out of state and dad has been managing her care since I live in Rochester approx 2 hrs from my parent’s home. I assist with contacting doctors and attending appointments regularly. My husband and I are constantly visiting her and staying the weekend and weekdays, since her diagnosis. We plan on visiting her this weekend and assisting my dad with daily cleaning etc around the house.
I feel devastated seeing her and watching her worse condition get much worse. I have hope and faith although feel both have been challenged in ways I never thought would happen. My question is has others who may themselves or know someone who has suffered similar situations. Any recommendations or advice you may have would be incredibly helpful! I have read multiple discussions on this board and feel validated by my family’s experiences.
I thank you all for sharing your hopes, fears, tears and love! The thought of doing this alone make me tremble and I truly appreciate the input.
Jenny

rose20

Hello Jenny
I am so glad you found this site. I'm sorry I can't be of much help as I do not have the knowledge the others here have. My brother who is 52 was diagnosed with stage 4 esophageal cancer. So I do know more of this disease by watching him.
I am so very sorry that your dear mom has this horrible disease. Bless her heart and all of you.
I can offer up prayers for you all.
Soon you will meet some of the most caring, courageous people that can be found and who can help you in many ways.
I know this all must be so overwhelming but you have come to the right place.
I will be praying God's peace for you and HIs help to your mom.

rose

Jdlang2166

rose20 said:

Hello Jenny
I am so glad you found this site. I'm sorry I can't be of much help as I do not have the knowledge the others here have. My brother who is 52 was diagnosed with stage 4 esophageal cancer. So I do know more of this disease by watching him.
I am so very sorry that your dear mom has this horrible disease. Bless her heart and all of you.
I can offer up prayers for you all.
Soon you will meet some of the most caring, courageous people that can be found and who can help you in many ways.
I know this all must be so overwhelming but you have come to the right place.
I will be praying God's peace for you and HIs help to your mom.

rose

Thank you!
Hi Rose,

Thank you kindly for your words of support and prayers. I deeply sympathize with you and your family as well. I will keep your brother in my prayers and hope for a peace in your family during this challenging time. I feel we have been touched by so many wonderful, warm and loving souls, we are truly blessed. I can contnue to praise for the added support despite the hurdles of the rollercoaster lifestyle we live today. Please tell me more about your brother, I embrace the power of healing from others and prayer.

May God's blessing also be with you!

Jenny

BMGky

I may have misunderstood.
I may have misunderstood. Is your mother's stage III or stage IV? Is the reason they're not considering surgery because she is a Stage IV. It does sound like she has extensive involvement. Is there a cancer team treating her? I do hope more knowledgeable members respond to your post. You mentioned that she developed thrush. During my husband's treatment, he developed thrush and it was quite painful for him to swallow, particularly water. We had so much going on with the feeding tube, etc., at the time that I can't remember how the condition was treated. The treatment for EC is very demanding, but this type of cancer requires aggressive treatment. Perhaps if you can provide a little more information, others might be able to offer suggestions. Where is the oncologist going in his treatment plan, i.e., what is his expected outcome.

Jdlang2166

BMGky said:

I may have misunderstood.
I may have misunderstood. Is your mother's stage III or stage IV? Is the reason they're not considering surgery because she is a Stage IV. It does sound like she has extensive involvement. Is there a cancer team treating her? I do hope more knowledgeable members respond to your post. You mentioned that she developed thrush. During my husband's treatment, he developed thrush and it was quite painful for him to swallow, particularly water. We had so much going on with the feeding tube, etc., at the time that I can't remember how the condition was treated. The treatment for EC is very demanding, but this type of cancer requires aggressive treatment. Perhaps if you can provide a little more information, others might be able to offer suggestions. Where is the oncologist going in his treatment plan, i.e., what is his expected outcome.

Clarification
I apologize for the very delayed response and hope to clarify. My mom does have stage 3 and at this time according to the Docs from our previous clinic (she has since been transferred) surgery was not an option, however since I have wrote this message multiple new developments have occurred. We have since transferred her to the Mayo Clinic, in Rochester, MN and she has developed pneumonia. We haven't spoke to the Oncologist team at this time since she remains in the ICU at Mayo we have limited information about treatment and outcomes. In the past, her treatment plan was 6 weeks, Taxatore, Cisplatain, and 24/7 5 FU pump. Both Taxatore and Cisplatain were on a three week cycle however, since she was hospitalized, and remains hospitalized since her first week of treatment. I am guessing the plan can and will definitely change. Since her hospitalization she has developed an ulcer in her upper GI, as well and Mayo has been monitoring and will intervene if necessary. We are praying for her recovery and eventual (fingers crossed) beginning to treatment again. Our faith has held us together and helped bring us closer. I agree EC treatment is difficult and hopefully Mayo Clinic can determine a treatment plan that will not repeat the first cycle. Was the feeding tube manged well at home for you? Reason being they do plan on providing my mom with one, potentially. Of course, again, this was the plan from the previous hospital before the transfer. I imagine things have changed but who knows. At this time she remains on IV TPN and I imagine until the ulcer is managed they will not allow food to pass down her esophagus.

I continue to read and pray for all of the people coping and sharing their stories on this site.

Thanks for your feedback,

Jenny

BMGky

Jdlang2166 said:

Clarification
I apologize for the very delayed response and hope to clarify. My mom does have stage 3 and at this time according to the Docs from our previous clinic (she has since been transferred) surgery was not an option, however since I have wrote this message multiple new developments have occurred. We have since transferred her to the Mayo Clinic, in Rochester, MN and she has developed pneumonia. We haven't spoke to the Oncologist team at this time since she remains in the ICU at Mayo we have limited information about treatment and outcomes. In the past, her treatment plan was 6 weeks, Taxatore, Cisplatain, and 24/7 5 FU pump. Both Taxatore and Cisplatain were on a three week cycle however, since she was hospitalized, and remains hospitalized since her first week of treatment. I am guessing the plan can and will definitely change. Since her hospitalization she has developed an ulcer in her upper GI, as well and Mayo has been monitoring and will intervene if necessary. We are praying for her recovery and eventual (fingers crossed) beginning to treatment again. Our faith has held us together and helped bring us closer. I agree EC treatment is difficult and hopefully Mayo Clinic can determine a treatment plan that will not repeat the first cycle. Was the feeding tube manged well at home for you? Reason being they do plan on providing my mom with one, potentially. Of course, again, this was the plan from the previous hospital before the transfer. I imagine things have changed but who knows. At this time she remains on IV TPN and I imagine until the ulcer is managed they will not allow food to pass down her esophagus.

I continue to read and pray for all of the people coping and sharing their stories on this site.

Thanks for your feedback,

Jenny

J tube Joey pump
The feeding tube worked very well. It is simple to use and instructions are very clear. My husband "thrived" on the nutrition. Oh, we had a few goofs and spills, my fault, not the pumps. If you have health agencies assisting you, make sure they know it is a J tube and not a G tube (if that is the tube your Mom is getting) A J-tube uses a pump. A G-tube uses bolus feeding and no pump. At least that is how it was explained to me. Initially, we had confusion and someone demonstrated bolus feeding. Overfilled the jejuneum and it is very painful. The pump had not been delivered yet... So, J-tube is great. I kept a chart of how much he took. He started it at bedtime and finished up by the time he got up the next morning. It is important to maintain the opening around the skin, changing any bandage often. The j-tube needs to be flushed according to a schedule. It is not hard. Believe me, if I can do it, anyone can. The first feeding formula had too much sugar. We monitored his sugar as he is a well-controlled Type II Diabetes person. When his sugar shot up, they changed to a formula that had less sugar. You open the cans as many as you need to meet your requirements, Add water per instructions. Turn it on and go to bed. You can also get portable things; however, we didn't need it. Others may have different experiences, but whatever, most agree that the j-tube really helps in rebuilding strength for the surgery. I sure hope she hurries up and gets over her pneumonia. Getting more nutrition will help her be able to undergo the continuing treatment. All the best. Please keep us informed. Mary

Jdlang2166

BMGky said:

J tube Joey pump
The feeding tube worked very well. It is simple to use and instructions are very clear. My husband "thrived" on the nutrition. Oh, we had a few goofs and spills, my fault, not the pumps. If you have health agencies assisting you, make sure they know it is a J tube and not a G tube (if that is the tube your Mom is getting) A J-tube uses a pump. A G-tube uses bolus feeding and no pump. At least that is how it was explained to me. Initially, we had confusion and someone demonstrated bolus feeding. Overfilled the jejuneum and it is very painful. The pump had not been delivered yet... So, J-tube is great. I kept a chart of how much he took. He started it at bedtime and finished up by the time he got up the next morning. It is important to maintain the opening around the skin, changing any bandage often. The j-tube needs to be flushed according to a schedule. It is not hard. Believe me, if I can do it, anyone can. The first feeding formula had too much sugar. We monitored his sugar as he is a well-controlled Type II Diabetes person. When his sugar shot up, they changed to a formula that had less sugar. You open the cans as many as you need to meet your requirements, Add water per instructions. Turn it on and go to bed. You can also get portable things; however, we didn't need it. Others may have different experiences, but whatever, most agree that the j-tube really helps in rebuilding strength for the surgery. I sure hope she hurries up and gets over her pneumonia. Getting more nutrition will help her be able to undergo the continuing treatment. All the best. Please keep us informed. Mary

J Pump
Hi Mary,

Wow thanks for the great advice on the feeding tube, at this time they haven't discussed much but I am hoping, like you noted she receives the J tube, which sounds pretty easy to use. My dad and I will be assisting her with managing the tube plus home health care. I am worried about infection and any other issues but your response helped and hopefully we will be getting her home sometime...soon Right now they received an order to move her down to a 'regular' floor and off the ICU. Her oncologist team is also discussing the possibility of beginning radiation in the near future, while she remains hospitalized. I keep praying Mayo offers some new ideas and treatments that won't cause such drastic changes/life threatening side effects. Thanks for your support.

Has your husbands feeding tube been removed? Or is he awaiting surgery?

Any helpful questions to ask the docs?

Thanks again,

Jenny

BMGky

Jdlang2166 said:

J Pump
Hi Mary,

Wow thanks for the great advice on the feeding tube, at this time they haven't discussed much but I am hoping, like you noted she receives the J tube, which sounds pretty easy to use. My dad and I will be assisting her with managing the tube plus home health care. I am worried about infection and any other issues but your response helped and hopefully we will be getting her home sometime...soon Right now they received an order to move her down to a 'regular' floor and off the ICU. Her oncologist team is also discussing the possibility of beginning radiation in the near future, while she remains hospitalized. I keep praying Mayo offers some new ideas and treatments that won't cause such drastic changes/life threatening side effects. Thanks for your support.

Has your husbands feeding tube been removed? Or is he awaiting surgery?

Any helpful questions to ask the docs?

Thanks again,

Jenny

He has finished treatment and surgery.
Bill is one year post op and has no evidence of disease. He has regular scans, scopes and oncologist visits. He still has his port that was used for the chemo therapy. His surgeon said if it isn't bothering you, just leave it in. We have it flushed every 6 weeks or so. I so hope your Mom gets her strength up. Even in the best of circumstances, the treatment is challenging. Don't be discouraged. This is to prepare you that even with successful treatment, there are many bumps and a few boulders along the way. My husband needed a jtube because during the chemo/radiation treatment, he developed a thrush in the esophagus and couldn't even swallow water. During this time, before the jtube, he had taste changes and texture sensitivity. First, he would eat one thing and then could no longer stand it. You waste a lot of food but you keep trying. He wasn't being difficult. It was a hard regimen. He dehydrated a couple of times during this 6 week period and had to be hospitalized twice. Encourage the doctors to be certain your Mom gets adequate hydration as the radiation/chemo messes with fluid levels. While he was in the hospital for the surgery, he continued to have tube feedings until such time as the surgeon was satisfied he could tolerate oral foods. He was hospitalized 30 days. He had the Ivor Lewis esophagectomy and the surgeon just wanted to be satisfied that he was well healed before releasing him. Radiation didn't bother him for the first twenty or so sessions; however, the cumulative effects affected his energy. He was really zapped by the last two or three sessions. He lost 70 pounds (of which he now is quite proud. Has bought an all new wardrobe and talks about how I should lose weight. Someone who has lost weight, stopped smoking or stopped drinking can really like to tell others how to do the same thing.) Chemo went well considering. Our oncologist prescribed anti-nausea drugs, etc. If she can't swallow pills, let the doctors know, there are many liquid equivalents. We had to switch all of his medicines to liquid. After surgery, you have to learn to eat slowly, small amounts, etc. There are many posts on here about managing eating, and Mayo, I'm sure, has nutritional guides to help. At first, my husband couldn't walk from one end of the house to the other--he was short of breath. Then, a nerve in his leg was compromised during surgery, and he had a weakness that PT fixed right up and all that is gone. Again, I kept a daily notebook about food intake, bodily functions, blood pressure, complaints, possible medicine side effects, etc. and would take them to the oncologist to ask about. I found each of his physicians ready listeners, wanting him to improve, and would change medicines for the side effects and work with him in any way for him to be successful. Don't hesitate to ask her doctor about anything. So, having given you all this heavy stuff, let me say that while it takes almost from 7 months to a year to feel like you are getting much better, you do get better withstanding complications. If your Mom gets to have an MIE, recovery is not as challenging but still has a learning curve. To sum it up, Bill is practicing everyday, busier than ever at the office. Comes home and gets into all his favorite activities. His vital signs are better than mine. If he eats wrong, he has a bad stomachache or dumping, but a little rest, a Maalox tablet, and he's on his way again. He avoids doughy, heavy foods. Enjoys a beer and eats anything he chooses--knowing the consequences if he eats something too sweet or too heavy. Loves steak. So, you are beginning a journey, but you can be the rock your parents need. Hopefully, her treatment is not as challenging. I do so hope she can get her strength up. Having someone who loves you saying you can do this, helps them keep going. His treatment became our treatment. I got so into "we" and "our" that I called our family doctor and asked his receptionist to make an appointment for "our" husband. She really laughed and said that she already had one and she wasn't ready to share mine. Also, post on this site, ask your questions, none are too silly, people will help. Paul61 was a big help to me as well as Mr. Marshall and so many others. We want your Mom to win. Our best to you. Mary

Alaska_Kim

Jdlang2166 said:

J Pump
Hi Mary,

Wow thanks for the great advice on the feeding tube, at this time they haven't discussed much but I am hoping, like you noted she receives the J tube, which sounds pretty easy to use. My dad and I will be assisting her with managing the tube plus home health care. I am worried about infection and any other issues but your response helped and hopefully we will be getting her home sometime...soon Right now they received an order to move her down to a 'regular' floor and off the ICU. Her oncologist team is also discussing the possibility of beginning radiation in the near future, while she remains hospitalized. I keep praying Mayo offers some new ideas and treatments that won't cause such drastic changes/life threatening side effects. Thanks for your support.

Has your husbands feeding tube been removed? Or is he awaiting surgery?

Any helpful questions to ask the docs?

Thanks again,

Jenny

J Tube
Hi Jenny, My husband is almost 8 weeks post MIE surgery and will have the J Tube in through his post op chemo for "just in case". We did need the just in case because he had to have his esophagus dilated a week ago and is on smooth liquids only for another week until he gets dilated again. we have been using the J tube for supplemental feeding at night to ensure he gets his daily calories. I also have to administer all his meds through the tube; those that aren't liquid are crushed and dissolved with water so the tube doesn't plug. So far, we have avoided it getting plugged, knock on wood! The tube is annoying for him to have, but it has been a godsend to help make up the difference so he doesn't lose too much weight. Hopefully then he will get to start eating real food again. He is just completing his first round of chemo with few side effects and healing very well from the surgery. I know we still have a long way to go with 3 more rounds of chemo waiting. I have learned a lot from reading others posts about post surgery recovery, diet and coping with chemo side effects. If your mom can get the J tube, go for it. Once into a routine, it goes pretty smoothly. As for questions, other than what I gleaned from this site and others, if what I heared didnt feel right, I ask why until I was comfortable with the treatment plans, etc (even if my husband was comfortable with what he heard, I didnt stop asking questions until I was) I hope your mom gets through this bump in the road and can get treatment started soon. Its great news that they moved her from ICU! Hang in there, it is quite a ride (not the fun kind either).