Just diagnosed stage 3-Many questions

JohnnyW
JohnnyW Member Posts: 23
edited March 2014 in Esophageal Cancer #1
First off this is my first post on the board but I have read it and it's been an invaluable resource for some of my concerns.I am a 61 year old male who had been in excellent health except for type 2 diabetes..

After thinking I had reflux I finally went to my doctor when I started to experience regurgitation after some dinners.His face showed a lot of concern and he immediately ordered an upper GI with barium swallow.That came back positive so after a endoscopy and then a cat scan and another ultrasound endoscopy I had a appointment scheduled with the tumor board at my medical center.I met with them last night and was informed that I have a stage 3 Adenocarcinoma at the gastro esophageal junction.The recommended treatment is Chemo,Chemo radiation and then reevaluate for surgery.The oncologist wants to start with a 3 drug regime which includes epirubicin cisplatin and fluorouracil (I may have these drugs mixed up) for 16 weeks.

My first question has to do with side effects and sustaining myself,I am alone with no family in the area so no caregiver to speak of,has anyone done these drugs without help.?I am very scared that I won't be able to take care of myself during treatment let alone drive to the medical center for treatment.Any and all help and insights will be greatly appreciated.

On another note my cat scan showed no spread to other organs but some local lymph nodes look to be affected and the tumor itself is in the outer lining of the esophagus.I am going to see the doctors at UCSF next week for there evaluation and will probably have treatment done there.Please let me know anything cause I'm really scared now that the facts are setting in.

JW

Comments

  • unclaw2002
    unclaw2002 Member Posts: 599
    Johnny,
    You are not alone.

    Johnny,

    You are not alone. You have found a new family here and everyone will be there to support you --- this is an amazing group.

    My father is 78 with stage 3 esophageal cancer at the gastric junction. He has one node involved, the cancer is through the outer esopageal wall, but there is no other organ involvement at this point. He also has well controlled type two diabities (controlled by pills, diet and exercise), high blood pressure controlled by pills and hearing loss. He is active and in relatively good shape.

    For your reference and understanding that everyone's medical condition is different and I am not a doctor I can recount to you to process we went through with my dad. The docs inserted a stint into his esophagus because he was having trouble swallowing any food and had only been able to get down liquids without pain. After the tests and staging they also inserted a port so they could administer his chemo. Because of his age and medical complications of diabities, one of his oncologists only wanted to use two agents, another wanted to use three and one wanted to use one.

    Believe me you are probably in for days like that when your medical team is coming from radically different perspectives. Anyway the determination was made that it wasn't going to do any good if the chemo killed him, so they decided even though three agents is the standard proticol that they would use two agents instead. Then we had the discussion about the side effects and concerns of the oncologists given my father's diabities and hearing loss. Although cisplatin would have been a first choice (and made him available for a trial with Erbutux a new wonder drug) two of cisplatin's side effects create liver failure and hearing loss.

    Because diabetics need to be careful of liver functions and diabeties is hard on the liver and the fact that my dad is already wearing hearing aids the doctors felt those two side effects were too risky for my dad. Instead he is undergoing a course which consists of carboplatin (similar to cisplatin but without those side effects) and taxol. The chemo is being administered to him once a week for three weeks, then a week off, then again for three weeks and then a pet scan to see how the tumor is reacting to the chemo - then more chemo and targeted radiation for 30 days. He is on his second course of treatment. Prior to the chemo and after they administer steriods to him intravenously, one side effect of the steroids, that noone mentioned to him, was that the steroids could effect his blood sugar and after the first course his sugar was over 400 when it is usually around a 100 to 120 range. They have gotten the sugar in control (increased his medication) and reduced some of the steroid use. One thing that I think and have told my dad, but his doctors in New Orleans seem to dismiss, is that his diabities doctor should be part of his treatment team and reviewing his blood etc. to see how this is effecting his diabities. Perhaps you would have more luck with your doctors if you feel it is relevant to your health and treatment.

    I know this is long but just some questions to consider -- and one other thing ask your doctor if they can arrange an appointment with the hospital social worker perhaps there are services, home health care providers or your insurance may pay for some at home care. Also, call the American Cancer Society in your area - there are lodges you can stay in for free near major cancer centers, perhaps that might help you out or they may have volunteers that would be willing to help. Also, many hospitals have chemo buddies for people without family in the area, to help with transportation and staying with you during the treatments ask what is available at your hospital. If you belong to a church or organization see if they might be able to get together some volunteers to chip in with meals, transportation or keeping you company. And dont forget to let your friends know you need help you may be suprised how they will come through for you.

    Good luck, keep the faith and ask for help.

    Best,
    Cindy
  • JohnnyW
    JohnnyW Member Posts: 23

    Johnny,
    You are not alone.

    Johnny,

    You are not alone. You have found a new family here and everyone will be there to support you --- this is an amazing group.

    My father is 78 with stage 3 esophageal cancer at the gastric junction. He has one node involved, the cancer is through the outer esopageal wall, but there is no other organ involvement at this point. He also has well controlled type two diabities (controlled by pills, diet and exercise), high blood pressure controlled by pills and hearing loss. He is active and in relatively good shape.

    For your reference and understanding that everyone's medical condition is different and I am not a doctor I can recount to you to process we went through with my dad. The docs inserted a stint into his esophagus because he was having trouble swallowing any food and had only been able to get down liquids without pain. After the tests and staging they also inserted a port so they could administer his chemo. Because of his age and medical complications of diabities, one of his oncologists only wanted to use two agents, another wanted to use three and one wanted to use one.

    Believe me you are probably in for days like that when your medical team is coming from radically different perspectives. Anyway the determination was made that it wasn't going to do any good if the chemo killed him, so they decided even though three agents is the standard proticol that they would use two agents instead. Then we had the discussion about the side effects and concerns of the oncologists given my father's diabities and hearing loss. Although cisplatin would have been a first choice (and made him available for a trial with Erbutux a new wonder drug) two of cisplatin's side effects create liver failure and hearing loss.

    Because diabetics need to be careful of liver functions and diabeties is hard on the liver and the fact that my dad is already wearing hearing aids the doctors felt those two side effects were too risky for my dad. Instead he is undergoing a course which consists of carboplatin (similar to cisplatin but without those side effects) and taxol. The chemo is being administered to him once a week for three weeks, then a week off, then again for three weeks and then a pet scan to see how the tumor is reacting to the chemo - then more chemo and targeted radiation for 30 days. He is on his second course of treatment. Prior to the chemo and after they administer steriods to him intravenously, one side effect of the steroids, that noone mentioned to him, was that the steroids could effect his blood sugar and after the first course his sugar was over 400 when it is usually around a 100 to 120 range. They have gotten the sugar in control (increased his medication) and reduced some of the steroid use. One thing that I think and have told my dad, but his doctors in New Orleans seem to dismiss, is that his diabities doctor should be part of his treatment team and reviewing his blood etc. to see how this is effecting his diabities. Perhaps you would have more luck with your doctors if you feel it is relevant to your health and treatment.

    I know this is long but just some questions to consider -- and one other thing ask your doctor if they can arrange an appointment with the hospital social worker perhaps there are services, home health care providers or your insurance may pay for some at home care. Also, call the American Cancer Society in your area - there are lodges you can stay in for free near major cancer centers, perhaps that might help you out or they may have volunteers that would be willing to help. Also, many hospitals have chemo buddies for people without family in the area, to help with transportation and staying with you during the treatments ask what is available at your hospital. If you belong to a church or organization see if they might be able to get together some volunteers to chip in with meals, transportation or keeping you company. And dont forget to let your friends know you need help you may be suprised how they will come through for you.

    Good luck, keep the faith and ask for help.

    Best,
    Cindy

    Cindy:
    Thank you for your

    Cindy:
    Thank you for your informative and well thought out answer,it has a lot of good info especially concerning the diabetes..Right now I'm still trying to sort things out but really appreciate the reply,I am sure I will be a regular fixture on this form.Thanks again..

    John
  • cfight
    cfight Member Posts: 69
    Hello. It's nice to meet
    Hello. It's nice to meet you. My father at the age of 64 was diagnosed with stage 4 EC. After two cycles of chemo, the tumor is completely gone. I recognize that we're not out of the woods yet, but this is one positive step forward. I mention this because I think it's important to stay hopeful even when it's so hard to. I became very overwhelmed with statistics when he was first diagnosed in December 09, but after of month of being completely consumed, I knew I had to change my attitude-- for myself and father!

    I know chemo side effects are different for everyone. My dad had a lot of fatique and digestive issues in the beginning. All of which improved before his next treatment. He was able to drive himself to radiation treatments and some chemo treatments. I was thrilled to hear that he went out to lunch with a few of his buddies last week.

    I would recommend talking with the oncologist about the side effects so you can anticipate what to expect and plan ahead as much as possible. I know there are organizations (visiting nurses association) that provide support at home. If you're concerned about driving, there may be transportation options available through your town or local council on aging. The hospital also may have a patient/advocate program or volunteer available to take people to and from treatments. These are just a few ideas that came to mind. I hope it's helpful.

    stay strong! I know this is a scary time, but you've found a wonderful support network on this site!

    Carolyn