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Frightened of recurrence

Tonir236's picture
Tonir236
Posts: 7
Joined: Apr 2012

Hi,

I'm new to this site. I am a 54 year old Female, I was diagnosed with EC in January of 2011. I went through radiation and chemo and finally surgery in April of last year. The Surgeon was very optomistic that he removed the cancer which had spread to local Lymph nodes. In June of last year, 3 months after the surgery, I received my first scan and the cancer was back. It was located in my adrenal gland and some soft tissue in my leg. My oncologist told me at that time that the EC was stage 4 and was incurrable. He advised me that I had a choice of doing nothing and having about 4 months to live or going through Chemo and having 10 months to a year.....I chose to go thru the treatment. I responded very well to the treatment and in September of last year my Doctor put me on an oral Chemo, Xeloda. In December I received a scan and was cancer free. Unfortunately, due to insurance changes, I was unable to continue with Xeloda as it cost about $3,000.00 per prescription and I needed 2 prescriptions a month. I went for a scan last month and again was cancer free without any treatments during that 3 month period. I am very grateful and was thrilled to hear the news but I know this is an incurrable cancer and as much as I try moving on with my life, it feels like a cloud over everything. Like I'm a condemned prisoner who got a temporary reprieve which is only good for 3 months and then I have to go before the Governor again to see if the death sentence has been upheld or if you'll get another 3 months. I find myself analyzing every opportunity that comes my way or decision that I need to make with (will I be here) Should I start something I may not be here to finish. I don't mean to ramble, I just wanted to see if anyone else is experiencing this and how you're coping with it. Prayer and faith have been everything to me during this hard time but I remember how I use to live and now thats just a memory.

Thanks for listening to me

God bless you all!

Toni

Daisylin's picture
Daisylin
Posts: 380
Joined: May 2011

Hi and welcome.

I'm glad to hear that you are doing well.
I am posting from Canada, so I don't know if it would apply to you or not, but thought I'd share this with you. My husband was also on Xeloda, and most of it was not covered by his drug plan. There was a very short and easy application form to fill out by the drug company and they covered all the costs of Xeloda. Our cancer centre provided us with the phone number to call. We did not even have to pay anything up front for it, they just contacted our pharmacy and took care of everything. As I said, it may be different here in Canada, but may be worth looking into.

Chantal
wife of Lee
deceased Nov 8, 2012

Tonir236's picture
Tonir236
Posts: 7
Joined: Apr 2012

Hi,

Thank you for the information. My Doctor gave me the number for the mfg but all they could or would do was give me a discount card but unfortunately the dicount wasn't enough for me to afford it. I noticed that you mentioned that Lee passed away in November. I am so sorry, Really, all of the medication and treatments seem to just prolong the inevitable when it comes to this disease. I will keep you in my prayers.

Toni

tb7
Posts: 57
Joined: Sep 2009
cindyruggs's picture
cindyruggs
Posts: 26
Joined: Jan 2012

Toni,

My husband Rocky was Diagnosed with stage IVB esophageal cancer, October 2011. He went to the doctor because he was feeling tired, and three days later he was told he had stage IV cancer. It rocked our world, literally. He has undergone transfusions, radiation, and 6 rounds of chemotherapy. His repeat PET and endoscope last week showed complete remission. While we rejoice for the remission, we also understand that it can and will come back, it is just a matter of time. Our doctor like your doctor told us from the begining 6-9 months with no treatment, maybe 18 month with treatment. Hard conversations to have indeed. We chose to do everything we can and we will continue to fight as long as Rocky choses to do so. Chemotherapy has not been too bad for Rocky so we are blessed. He continues to work and when we have small breaks in treatment we travel and enjoy life. The doctor is putting Rocky on a "lighter" version of chemo to try and keep him in remission for as long as possible. We start that on Tuesday.

I understand what you were saying. Anytime someone mentions doing something in the furure I think will he still be feeling ok by then, will he be still be here, etc? To look to far ahead bring fear of the unknown. There is a cloud that hangs over us, it is never too far away. I think it is totally normal and helpful to get your feelings out and be honest about it. Just talking about it helps Rocky and I. He says those things to me, and as painnful as they are to hear, I know he needs to say them. Prayer and faith are HUGE, I am thankful we have Jesus and we are never alone. We continue the good fight, walking each day in faith, praying for a miracle, while being prepared for the more than likely outcome. We cherish the good days, and take it one day at a time. Praying for peace for you and for comfort as you feel your feelings and share your fears. This is a safe place filled with people that really do understand.

Blessings,

Cindy

Tonir236's picture
Tonir236
Posts: 7
Joined: Apr 2012

Hi Cindy,

Thank you so much for sharing your situation with me. I was in your position the last few years. My sister had Lymphoma, she passed away last July and even though I know she is with Jesus and I'll be seeing her again, there is such a hole in my life. As difficult as it is dealing with my cancer, It was harder watching my sister go through this process so being in the position of caretaker and patient, I know what you are going through. I'm so happy that you know Jesus because he has been the only one who could have given me the strength to care for her and deal with my own disease. I will be keeping you and Rocky in my prayers. Keep your faith!

God Bless you,

Toni

cindyruggs's picture
cindyruggs
Posts: 26
Joined: Jan 2012

Toni,

I am sorry to hear about your sister. What a unique perspective you have, both caregiver and patient. My husband has said many times to me, he feels so bad for me. He does not know how he would be if it were reversed. I think it is almost unbearable either way. He is the LOVE of my life, I can't imagine life without him. The weight of this feels so heavy at times it is hard to breathe. Just last night we were at dinner and Rocky said he wanted to take this certain trip this summer because he feels he will not be here next summer. My breath left my body and tears just fell like a river. Those moments sneak up and are so hard for both of us. God is growing us each step of the way and as you said, at times we see this as a blessing in an odd way. There have been many, many gifts and blessings in the pain. Are you married? Do you have someone that cares for you? You will be in my prayers. I pray you find a way to continue the medication with help from the drug company, I pray you stay feeling strong and hopeful.

Blessings,

Cindy

Tonir236's picture
Tonir236
Posts: 7
Joined: Apr 2012

HI Cindy,

Yes it was difficult watching my sister. I'm not married and have no children but I have wonderful friends and other sisters who are always there for me...It seems like I'm more there for them, They get so upset dealing with this disease. I'm in remission and of course they take it as I'm cured and thats fine, theres no reason for them to carry this all the time. They have husbands and children and that has to be their focus. Watching my sister was hard but again there were a lot of blessings mixed in. She lived with me the last 3 years of her life. She wasn't diagnosed for a year after she moved in and I was diagnosed 7 months before the Lord took her home. I have so much to be thankful for. God allowed me to care for her, she was happy and I was able to keep her home right up until the last day, she didn't want to be in a hospital. I promised her that I would be there when she died and God allowed me to keep that promise. In a way, it was better that she went before me, she wasn't that strong and I know she couldn't have handled that. The day after she died, I was told that my cancer had returned and again, God in his goodness gave me the strength to bury my sister and then begin treatment. After I went into remission this time, I fell apart....I guess I had to put grieving my sister on the back burner in order to deal with my situation and I couldn't have done that without Jesus. I've been able to go back to work part time, I enjoy the life I have but in all honesty, I don't think I would go through the ordeal of chemo again. I want to enjoy what time I have not just exist. But, who knows what I'll say when that time comes and I know it will but,,,,that day isn't today. Today I feel good and tomorrow is in God's hands. Cindy, I know the pain you are going through, I know there are times you have to leave the room to cry because you want to keep up a positive appearence but you can't....I have a swing in my back yard that I used for that all last spring and summer. I will be praying for you and for Rocky. You are truly blessed to have each other and God will give you the strength you need as you need it.

God Bless you,

Toni

jtebo1955
Posts: 46
Joined: Apr 2012

Hi,
This is my 1st visit to this message board. I'm 57..May 15th, My EC was also found Dec 2010, chemo and radiation, surgery in April, found in lymph node so 4 more rounds of chemo. I have had 2pet scans all been clear so far. But like you I feel like a dark cloud hangs over my head. I have a super husband and family support. I have really tried to move on best I can but every little pain I fear the worse. How is your eating? Mine is fine except I can't enjoy meals to much anymore, small snacks work very well, but I do miss going out for dinners as we did before. I feel lucky to feel as good as I do after reading some troubles others have had. I'm sorry you had to have this, but glad to find someone else to talk to. Thanks for listening.

Tonir236's picture
Tonir236
Posts: 7
Joined: Apr 2012

hi,

I can't eat the way I use to either but it has gotten better as time has gone on. I had my surgery a year ago and now I can eat better than I did when I first had it, What I hate is the way I have to sleep. I can never get comfortable propped up but even that has gotten a bit better. before I had the surgery I read so many horror stories regarding this disease and the surgery....It just goes to show that results are individual. It's great that you have a support system like you do. I have a great family (sisters) and friends who have been a real blessing to me but I notice a lot of times I'm being supportive of them instead of them being supportive of me. They're in a terrible position. They don't know what to say, They're afraid and feel like thay have to hide it for my sake. Sometimes I think being a loved one of someone with cancer is worse than having the disease so as supportive as they are, it's good to talk to someone who know exactly what you are going thru... I'm sorry you had to go thru this too but there are blessings in every situation. you just need to look for them.

God bless you, Feel free to contact me anytime,

Toni

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