CancerCompass message board discussion started by linda c. on 10/25/2002 http://www.cancercompass.com/message-board/message/all,475,0.htm Thu, 04 Dec 2008 00:00:00 GMT Thu, 04 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Last time I wrote about this disease none of the words seem to come out right. But now we have good news - my husband's cancer has shrunk by more than 3/4 of its size with the chemo, radiation we can't believe it or the doctors. This is a very rare cancer they said and at the time it was at stage 4b and gave him 6 mos to a year. That has been 13 mos. ago he's doing much better and hanging in thank god. We have such young kids their ages now are 12,9,2,1 and my husband is very young also, only 33 yrs. old and myself, I'm 30. And weve been married for 12 years. It's been real hard this past year but things are looking better. Thanks for all the prayers and hope you will keep praying maybe they will tell us it's gone. Thanks to all from the Collins family. linda c. Fri, 25 Oct 2002 00:00:00 GMT Hi. I ,too have thymoma. It has metastasized to the lung. I am 36 and a mom to 5 kids ages 16,15,12,3 and 2. Was diagnosed while pregnant with the last baby. Tell me more about the chemo regimen they've used for you and your side effects. Waiting to hear back. Pam Pam M. Sat, 01 Feb 2003 00:00:00 GMT Hi Linda, Hi Pam. I was diagnosed with Thymoma Just this April 2005. I'm 32 years-old. They said it is a rare type of cancer. I am being treated with chemo at the moment (had my 3rd today, 7/26/05) and doing well with the treatment regarding side effects (only hair falling out) and a little bit of nausea but there is medication for that. Pam I am on Cytoxan, Adriamycin, and Cisplatin. I hope you're doing better. I would like to hear from you guys. Linda, I hope your husband is also doing good. I live in NC. We're basically just neighbors. Joel Recently Diagnosed Tue, 26 Jul 2005 00:00:00 GMT Hi there. I had my 6th and last chemo a couple of weeks ago. I just had my CT scan 2 days ago and waiting on results. Last time I was told the cancer had shrunk 50%. I am hoping that this time it is gone. I hope everyone is doing well. I hope to hear from any of you out there. Please hang in there and keep a good positive attitude. God Bless you all. Joel Recently Diagnosed Thu, 10 Nov 2005 00:00:00 GMT Hello to all. My heart goes out to all of you. I have alot of questions and there probably aren't any answers. My mother had thymoma 6 years ago. She has surgery and radiation. A year ago they found 5 spots and now there are 10 on the lining of her lung. She went through one chemo treatment, which put her in the hospital for 2 weeks. She just saw her doctor today and he told her this is treatable but not curable. Does anyone know if this is true. She is thinking about stopping treatment. I told her I would get online and see what I can find. Can anyone help us. God bless all of you. Krista_ka Krista_ka Tue, 15 Nov 2005 00:00:00 GMT Hi Krista, My name is Joel and I'm 32yo. I was diagnosed with Thymoma in April and had my last chemo 3 weeks ago (total of 6). My doctor did not do surgery as it was not an option for me and I would not consider it for fear of spreading. I was treated with Cytoxan, Adriamycin, and Cisplatin. I was told that mine was curable. I am now receiving an anti-cancer injection once a month which started yesterday. I am from Burlington, NC. My doctor is Dr. Choksi and he is GREAT. His phone# is 336-538-7725. Recently Diagnosed Wed, 16 Nov 2005 00:00:00 GMT I gave my mom the info you gave me. She is going to see another doctor. What are these anti-cancer shots, I have never heard of them? Do you know what causes Thymoma? My mom would love to get someones phone number and talk with some other people that have thymoma. She is scared to death to do anymore treatments because the first treatment made her so sick. She is looking for the papers saying what medication they used to compare to what I have found here. Does anyone know of anymore website that are good, to teach us more? Joel, thanks for your response. Krista Krista_ka Wed, 16 Nov 2005 00:00:00 GMT Hello Joel, I am so glad to hear your treatments are going well you have been in our prayers. you offer a lot of hope to those dealing with Thymoma. My Husband had his last of 4 surgeries in October. He had a pet scan a few weeks ago and there still seems to be some viable tumor left. (he had a lot of scar tissue from his 1997 surgery so his is case is not so easy this time around) He has an appointment next week to discuss more chemo , we will ask his doctor about the anti-cancer injections. Thanks for sharing that information I will let you know what his doctors say after our next visit. Stay Strong. EB Thymoma 1996 to 2005 Wed, 04 Jan 2006 00:00:00 GMT Hello EB. The anti-cancer drug I'm getting is more like an anti-growth from what I was told since the cancer is a growth hormone. It is called Sandostatin LAR. I hope you're husband is doing good and keep the faith. I still have some tumor left but the doctor feels it is best to block it from growing. I still would not consider surgery, thus the injection. I get it once a month. How old is your husband by the way? Hope all is well. God Bless. Joel Recently Diagnosed Sat, 07 Jan 2006 00:00:00 GMT Hi Joel, Thanks for the info My husband just wrote it down and will ask his doctor about it this week, He is 34 years old, and not able to have any more surgeries , He has not had any treatment at all since they stoped the chemo in May to start the first of 4 surgeries to remove the tumor from sections of his vertibral body as well as 4 ribs and tissue around his heart. They were talking about chemo in Dec but have put treatment off to let him get stronger and put back on some weight. He is not at all looking forward to any more chemo and hoping the doctors will have something eles in mind. Thanks for staying in touch I will write agian after this next appointment. I am so happy that you are feeling well, and sharing your story as it is one of hope. all good thoughts to you EB Thymoma 1996 to 2005 Sat, 18 Feb 2006 00:00:00 GMT  On 2/18/2006 Thymoma 1996 to 2005 wrote:Hi Joel, Thanks for the info My husband just wrote it down and will ask his doctor about it this week, He is 34 years old, and not able to have any more surgeries , He has not had any treatment at all since they stoped the chemo in May to start the first of 4 surgeries to remove the tumor from sections of his vertibral body as well as 4 ribs and tissue around his heart. They were talking about chemo in Dec but have put treatment off to let him get stronger and put back on some weight. He is not at all looking forward to any more chemo and hoping the doctors will have something eles in mind. Thanks for staying in touch I will write agian after this next appointment. I am so happy that you are feeling well, and sharing your story as it is one of hope. all good thoughts to you EBHi Joel,  I have searched and searched for people on line that have thymoma and this is the most recent information I can find...and it's a year old.  My mom was diagnosed with thymoma, stage 3 just 2 months ago.  They had been tracking a mass that she had needle biopsied (and it showed nothing wrong) for over a year, but in November they saw that the tumor had grown.  She went to IU Cancer Pavillion and had another biopsy...this time it came back with the bad news.  We are all in shock but trying to deal on a day to day basis.  It seems we take one step forward only to be knocked back two steps.  She is on the exact same chemo treatment that I saw you were on in one of these e-mails.  How quickly did your tumor shrink, and what stage was yours when it was diagnosed?  What sides effects did you get.  (Mom just had her 1st treatment this Monday and has that terrible metallic taste in her mouth and a dull headache.  Thank God, no nausea thus far.  Any hints on how to combat the nasty taste of metal she has?)  Mom's tumor has started to wrap around a major vein/artery and the specialists at IU said they are going to try to shrink it enough to remove it.  Her doctor, Dr. Loehrer is one of only a handful of thymoma specialists in the country so we feel like she is in good hands.  However, if we could get some more information from others that have gone through this and are doing well now it would be quite encouraging, as we seem to read nothing but negative.  Can anyone give us some hope?  ThanksJo Hope Please Fri, 26 Jan 2007 00:00:00 GMT