Hello

[jones7676]

Hi to all of you!

I have missed my daily visits. First the chemo I'm on kicked my butt, then I caught a bug and was very sick for a couple of weeks and then my computer caught a virus and I finally had to bring it in for repair/cure. So, I have not been online regularly since 2 days after Tip and Tex left my house. I have so much catching up to do.

I'm quite nervous as I have a PET and MRI this coming Thursday. I always get so worried. My friends try to reassure me and tell me to be positive, but it is hard - I'm always afraid I'm going to be told bad news and it will be the "end of the line". I try to remain optimistic, I'm a fighter - I know many of you understand.

Also, I remember reading someone questioning others about Cancer Centers of America, but then I wasn't online to read the replies. I am very frustrated by poor service etc. where I currently get treatment (this is nothing new, but all of the staff that worked in the scanning dept. quit and I feel it is the straw that has broken the camels back). If CC of A wasn't so far away (about a 7 hour drive) I wouldn't be agonizing so much. I am also worried about how I will/would be treated by the office where I am currently being treated, if say I needed weekly treatments to be administered there after I consult with them. I could explain at length why I'm so frustrated, but I don't think anyone needs to hear my whining. You have enough challenges of your own.

I would like feedback from others who have sought other opinions and treatments (how was it received, did you have to go back etc.). I would also like to hear from anyone who has went to Cancer Centers of America or knows someone who did.

I live in Upper Michigan and there are not a lot of choices as far as where to go for treatment nearby. How far should I go? Across the country? Into the lake? :-)

Many of you are wise about all of this and I sure could use your help and advice. Feel free to email me if you do not wish to post here.

Thank you to all of you who decide to provide me with information/opinions.

[Becky]

Dear Barb

Firstly, I am thinking about you and scanxiety. I am really responding about getting other opinions. Although I am not Stage 4, when I was diagnosed, Herceptin was not available to early stagers yet. In May 2005, the ASCO meeting had its "rock concert" announcement on the Herceptin trial and recommended all women who were less than 6 months from their last chemo should begin Herceptin therapy at once (this later changed to 12 months from the last chemo). I was alittle more than 3 months from my last chemo and I was julibulant! What was even better was that the very next day I had an appointment with my onc.

Well, during that appointment, my onc told me that I was mistaken and it was only for women who were 6 months from diagnosis and I was 8 months from diagnosis. I knew he was wrong about this because I read the news online AND I was a member of this support group (and you know we know all the breaking news in regard to Her2). So, this group advised me to go elsewhere and the next day I called Sloane Kettering (who I got a second opinion from when diagnosed) and they were immediately starting. I got an appt with the onc I saw there who called me and said that she knew I was in the 6 month window but since I didn't get chemotherapy there, I had to bring copies of my chemo record (because protocol is protocol). I called to get the records and my husband picked them up. My onc (at the time - I switched later on to someone else) saw my hub and ended up calling me. I told him I was switching so I could get the Herceptin. He told me "well Becky, if you really wanted the Herceptin, all you had to do is ask". I told him I thought I was pretty clear. Anyway, I went to Sloane anyway because I was afraid I might not get it but ended up getting the treatment from my original onc who continued with it until I couldn't put up with him anymore and switched to a new onc who (again) continued with the Herceptin treatment.

My current genius onc confers with other doctors all over the country on the best treatments. He has had patients go to MD Anderson and Duke because those oncs specialize in a certain kind of brain cancer etc. He gives the treatment they prescribe. He also conferred with the University of PA on me and my dcis.

I read a book called "There's No Place like Hope" (author's first name is Vicki - I can't remember the last name). She had bc that progressed to stage 4 and was cured at the Cancer Center of America in Zion, IL. They sounded terrific in the book and I figured I would go there if I ever needed to. If your current onc refuses to confer with someone else, not only are you losing but so are they (as they might learn something that would help someone else).

I say - go for it. Someone will give you the treatment. The CCA can call your onc and get verification that he will continue the treatments at home (and you might be able to get the first treatment there). Remember the Amer Cancer Society might have free housing near CCA that you can use for a little while too.

[Ceesun]

Hey Jonesy...Barb, Wish I could offer you some advice as I am from MI as well. I am treated at Oakwood Hospital in Dearborn which is associated with the University of Michigan...just wondered what you have available in the UP? Any associations with major cancer centers? Sincerely, Ceesun

[Bill]

Hi Barb! You'll be in my thoughts and prayers, especially on Thursday. For what it's worth, about 6-7 months ago, Nicola/Vamoonrise was looking into the CCA and there may be some posts there to look into. Try not to worry too much, and make sure you are getting enough rest, Love, Bill (PS- I've always loved that picture of you sitting in front of your ham radio in that ice-fishing shack)

[Sheila]

Barb
There was one person on our board Lu Ann who went to CCA in Zion...she was from Ohio....she passed away late last year....I do know that alot depends on your insurance...they do not take certain types, I know one person who wanted to go there, but said they could not afford what they would have had to pay out of pocket. Wouldn't Chicago be closer? My Oncologist Dr Wolter, and Dr Cobleigh at Rush in Chicago are both part of the original clinical trials with Herceptin ...they are in the book The Making of Herceptin....I would say if you can't find someone good in MI, come to Illinois....my husband has a brother and a sister that live in Michigan, one in Grand Blanc and the other in Perry...the bad thing about coming to Illinois is the traffic...no good way to get here from MI without going on 80/94.....HEADACHE~~~~
Please PM me if I can help in any way Barb.