I am new to this web site. I don’t know why since I am a long term thymic cancer patient. I also have myasthenia gravis. I was originally diagnosed with thymoma in 1986, had it surgically removed and then radiation for 30 days after. I was deemed cancer free for 13 years. Then in Jan. 1999 I had pneumonia and recurrent pleural effusions which would not go away. Finally my pulmonologist figured out that my tumor had become active again.
Ironically, I was a clinical research associate so I knew a lot about the medical profession. I immediately contacted Dr. Loehrer in Indiana and Dr. Shin at MD Anderson. I consulted with both of them. The surgeon at MD Anderson of course recommended surgery while Dr. Shin did not. I had already had surgery. Dr. Loehrer had consulted with my wonderful oncologist here in Denver, Alice Luknic, and I had 3 cycles of cisplatin, adriamycin and cytoxan. The tumor did not shrink in size though. So I went to see Dr. Shin and his pathologist diagnosed me as thymic carcinoma rather than thymoma. He consulted with my oncologist here in Denver and recommended a cocktail of taxol, etopside and VP-16. I had 2 cycles of that and the neuropathy in my fingers was so bad that I couldn’t pick up a pencil. My oncologist was concerned because sometimes the neuropathy won’t reverse once treatment has ended. She is concerned with my quality of life. So we stopped treatments and my pleural effusion abated.
I developed unexplained pain in my face and legs. I went to a well-known neurologist here in Denver but no one knows the cause. I take pain killers to function throughout the day since I am a mother of an 8 year old. The tumor became active again in Feb. 2002. I had more pleural effusion, my own indicator. I had 6 cycles of carboplatin and taxotere. I have residual neuropathy in my toes now. It was a pretty awful time. I lost my hair again and felt terrible for months afterwards.
But in 2003 I felt much better however functioning on copious amounts of caffeine and I see an acupuncuturist for the pain. I also take a lot of herbs and vitamins. However about 4 weeks ago, (July 2003) I felt like something was definitely wrong. I was taking a nap right after I woke up. I was short of breath and had a slight cough when I laid on my left side. Well, I was right, I had 1200 cc of fluid removed from my left side, more pleural effusion. I had CT scan performed a couple of days ago and will discuss a treatment plan tomorrow (Aug. 18, 2003) with my oncologist. I was told by my pulmonologist last year that the tumor could invade my pulmonary artery and that would basically be my death sentence. The MRI last year indicated that the tumor is growing adjacent to my pulmonary artery rather than invaded it. Yet right now I am worried that it has invaded it now since I feel so terrible.
Needless to say, I am scared that I won’t be able to stomp out the tumor growth this time. But I went to Hawaii this year with my family and have lived as fully as I am able too. Wish me luck!
Of course you can post my story on the web site. I always like to respond to people with questions since I am a “long time survivor”. I belong to the rare cancer list group also. Hopefully I will be able to start on xeloda — it has been used for breast and colon cancer. Odds are that it has not been used for thymoma so I am hoping it will work for me. Dr. Shin told me that is was my tumor was more epithelial which is more resistant and was really not considered a thymoma but thymic carcinoma. I am 43 years old. So I had surgery and radiation when I was 26 and it returned when I was 39. Like all cancer patients, birthdays are a good thing!
From the Forum:
I just made up my yahoo ID. Do you like it? Lynniswell. I thought some humor was required. I am lucky to be a mom of an eight year old who keeps me grounded in the here and now. When she is at school I miss her but need the rest. I find it hard at times to just rest. I also realize that I live on too much caffeine. It’s bad when the Starbucks people recognize me. But I feel like I need this “false energy.” I don’t want my daughter to remember me as being sick all the time. Although, she will remember that I I take alot of pills all the time.
I can be rather stoic about being ill which is a savior and curse simultaneously. I become frustrated with people when they don’t understand but I don’t really explain how tired I can get either to them. Some friends say and do exactly the right thing for me and others I just want to choke! And say, don’t you get it, I am ill and can’t be running around like a normal person. The problem with me is that I “act” normal so it’s really not their fault is it?
My cancer is like Bosnia, people know that it happened but don’t want to listen anymore. And it is tiresome.
Obviously, patience is not a virtue I possess. Although, I am getting proficient at parallel parking so I guess their is always hope!
This is a forum to share thoughts, feelings and ramblings which is what I am doing! You all take care.
FEBRUARY 1, 2004
I had my latest CT scan of the chest without contrast on Jan. 26th. The CT scan showed stable mass at my mediastinum and some pleural effusion remaining on my left side but no increase. In the past I have had some residual effusion and when I went off chemo, the effusion had gone away on its own.
So after conferring with my oncologist, she felt that the xeloda had reached its maximum killing effect for now. I have been on it since September of 2003. Two weeks (1000mg/2x per day) on and one week off. So I am ready for a break too. Even though, I got to keep my hair, thank goodness. I still felt like it was wearing me down. I will have another CT scan in 3 months, to monitor tumor activity. I told my oncologist that I have no illusions about this tumor ever
going away forever. She thought we could always go back to the xeloda. But she is also concerned about my quality of life and knows how much it energy it takes to keep up with an 8 yr old. She suggested that I go on vacation. I told her that we wanted to go to Kauai. I said that as a cancer patient you can rationalize going on fabulous vacations. She said, “everyone should live that way! and I think your doctor needs to go with you!” What a woman. So hopefully I will have a good three months. My reprieve. I wish all you the best and want to send extra special thank you to Alan for maintaining this web site where we have all found each other and give each other such encouraging support.
Update on Lynn. I had my 3 month CT scan and it showed no change from my Dec. 2003 scan which is good news. My oncologist thought that I didn’t need treatment. I still have pleural effusion on my left side and a soft tissue mass in my anterior mediastinum. She considers me to be in remission. While I think of remission as the cancer being gone. I don’t feel well enough to return to work but I feel better than if I was on chemo. It’s a very odd place to be in this in-between stage. But I will enjoy it as much as I can. I have experienced the alternative and it’s not good! My love to you all.
Yippee!! New Year. In the year 2000, I didn’t think I would make it this far to tell you the truth. I am still on the 3 month plan. But instead of a CT scan every 3 months, I have an x-ray every 3 months. I am still considered to be in partial remission. Meaning, the tumor sites are not active but I still have the residual pleural effusion from, get this, December 2003. It’s not bad so I can certainly live with it.
In October, 2004 I had diverticulitis. My colon burst and I developed peritonitis, had emergency surgery and was stuck with a colostomy which the surgeon told me is temporary. I am supposed to have another surgery at the end of January to “put me back together” and get rid of the bag.
Needless to say, I was rather upset. Here I was feeling pretty good for me and this happened. I had myself quite a nice pity party where I cried for a whole day and invited anyone I knew to join in. Then I picked myself off the ground AGAIN and proceeded to move forward. I was thinking, “how much can a person take in a lifetime?
Apparantly quite a bit. We have all gone through alot of misery in our own circumstances.
So I am not in treatment for my malignant thymoma. But I am awaiting another major surgery.
I have felt the best during these holidays. There has been some discussion about staging and classification of thymoma and thymic cancer. As Alan has pointed out even oncologists don’t know the difference. There are alot of journal articles on the differences between the two. I think only pathologists can tell the difference. I have been told at MD Anderson that I have thymic cancer. However due to my symptoms and what I have seen from journal articles, I would classify myself as Stage IVb malignant thymoma.
I wish you all the best for the new year. My love to all of you.
Lynn (Jan. 5, 2005)
Hello all. You would think after having two major abdominal surgeries that would be enough for this year. But after a check up chest x-ray, more fluid has accumulated on my left side (pleural effusion). So I have started on Alimta which is the same drug that Dr. Loehrer is using in Indianapolis. I will keep you up do date as to its effectiveness.
Take care to all of you