croberts20
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Hi There –
I am in Atlanta too and my husband has CC. We are currently being treated at MD Anderson. My husband is in a trial. The trial is in pill form so we only have to travel there once per month. He was diagnosed in April. I would really recommend that you go see Dr Mark Johnson or Dr Sellers at Piedmont. They work together. We have seen Johnson twice and we love him. They are aggressive. They will not do surgery on my husband right now because he has tons of affected lymph nodes. BUT, it does not sound like that is the case with your husband. My husband, Travis, is 38 and we have 3 little kids. I am so sorry that you are going through this. It is awful. Contact me anytime. We are in Marietta. I will be happy to share what we have learned.Regina –
My husband is in the trial. He started on 10/23. He was diagnosed in April and was on Gem/Cis for about 5 months and it quit working. It quit working right in time to get on this trial. We go back to MDA on 11/20 for the first blood work apt. We are working with Shroff and Zinner as well.
My husband, Travis is having worse side effect than he did with Gem/Cis. His rash is really bad and his belly bothers him. Gas and diarrhea. Tonight he even has chills. His blood pressure has gone up too.
I wonder if we will be at MDA at the same time?
My husband is 38 and we have 3 little ones. Ages 6,4 and 2.
Praying that this trial does some good!!!
Carrie Roberts
From AtlantaHi All –
We are the ones who went to MD Anderson and paid $24,000. Our ins did not cover it at all and they would not see us unless we paid that upfront. We had to charge most of it and we are slowly paying it back. My husband was not 100% diagnosed at the time. He had not been treated at all either so we were going for a confirmation on diagnosis as well as a suggestion for treatment. It may be different if you are already being treated and they don’t have to do a CT scan or pathology, but that is what we were going for. The $24,000 covered Pathology, CT Scan, Blood Work, and two LONG dr visits with Dr Shroff who specializes in CC and Pancreatic.
I agree that it is outrageous, but I promise that it is true:)!I found a thread from 2006 and 2008 on here and it doesn’t look like anyone recommends Burzynski. Is the opinion still the same?
Anna –
So sorry that you lost your mom. What a difficult time. I pray that you are able to navigate through the next few months with peace and strength from God. My thought are with you tonight.
CarriePam –
I think of you and Lauren constantly! I am praying for your daughters perfect recovery.
CarrieTerri –
I don’t know how to help at all. I just want you to know that I will pray for you. My husband was recently diagnosed and it is so hard. I know that your world has been turned up side down. This is a great place to vent. I am very new to this as my 38 yr old husband was just diagnosed about a month ago, but I know what it is like to be a care taker and then have to deal with kids. It is an exhausting task and my husband is not having the emotional issues that your poor mom is having. That breaks my heart for her and for you. The others on this site have much better advice than I do, but I wanted you to know that I care.
Carrie from AtlantaWillow – Thank you so much for answering. Whether it is common or not it makes me feel better to know it has happened. Now I can go to sleep tonight and be thinking maybe it will happen for my husband:). We start chemo tomorrow. First treatment. We are praying hard. Carrie
Pamela – I am so excited for you and your daughter. What fabulous news. Do you mind if I ask a few questions? Did your daughter have any cancer in her lymph nodes? I don’t think so because I have looked back at your previous posts, but I am just curious. My husband does and I just don’t know if the chemo ever kills this cancer. Meaning will chemo alone get it out of his lymph nodes? I know that no one has the answer, but I guess I mean does it EVER happen? I know that you are tired and I don’t want to bother you too much. I am going to also post a general question about this, but you seem so helpful so I thought I would go straight to you:). I hope that Lauren’s recovery goes just perfectly. My prayers are with you and your daughter. Carrie
I am so excited for you. My husband (38 yrs old and just diagnosed) starts Gem/Cis on Thursday. I pray that we get the same results. His is in liver and lymph nodes.
Rain – Thank you so much for your info and thank you for taking the time to read our posts and blog. Thank you most of all for your prayers from Australia!!!
