Hi, all!
Here's the latest update:
I was fortunate to get a call from the scheduling nurse in Boston saying that they had scheduled all of my pre-admission tests for this Monday. This means that if I'm cleared for treatment, I'll be starting with the hospital stay on Tuesday, the 9th. It would have been Monday, but apparently they celebrate Columbus Day in a big way up there! You'd think Columbus landed in Massachusetts! I'll be in the hospital until the 15th if all goes well, and then get to come home for a week. My next week of treatment would then start on the 22nd and I'd be home the 28th or 29th. I'd be able to stay home during the entire month of November with just a couple of one day visits back to Boston for new scans, etc. If the scans show improvement, we'll start the whole process again in December and then as many as 4 more times until all of the cancer is gone.
Another fortunate thing: the rooms in Boston are set up so that Jim will be able to stay with me at all times. That will certainly be a big comfort to both of us. He'll have his laptop with him, of course, so he'll be able to bring you updates as the week goes on.
So, please say an extra prayer that I pass all of the screening tests so I can begin treatment on the 9th. I'm anxious to start the battle. Thanks for all the love you've shown.
Love ya!!!! Linda
Saturday, September 29, 2007
Thursday, September 27, 2007
Finally, some time to breathe!
To my wonderful family and friends:
Well, we had the last of the "fact finding" appointments yesterday, this one with Dr. Bhandari, an oncologist with Mercy Fairfield, and now we're in the waiting phase to see when I can be scheduled for pre-testing in Boston and then admission. Dr. Bhandari was extremely nice and helpful. At first he thought that it was unwise for me to seek treatment in Boston, but after telling him all the reasons we had, he said that if it were him he would go for it, too, since it's the only chance of a true cure. He also said that if that treatment didn't work he would be happy to work with me in the future on which medications, or combinations of medications, would be the best next step. Needless to say, when Jim and I left that appointment we were just so relieved that the first step was over and that we felt very comfortable that our decision to go to Boston was the right one.
So now I do have a little time to be my normal self for a while. We have a rather busy weekend planned with family and friends, so we'll have some time to think of other things besides cancer and treatments. It'll be good to have some down-time! I'll probably say this at the end of each blog, but thank you all so much for your support, prayers and love. Each card or message means the world to me and is definitely helping to carry me through this time.
Love you all!!!! Linda
Well, we had the last of the "fact finding" appointments yesterday, this one with Dr. Bhandari, an oncologist with Mercy Fairfield, and now we're in the waiting phase to see when I can be scheduled for pre-testing in Boston and then admission. Dr. Bhandari was extremely nice and helpful. At first he thought that it was unwise for me to seek treatment in Boston, but after telling him all the reasons we had, he said that if it were him he would go for it, too, since it's the only chance of a true cure. He also said that if that treatment didn't work he would be happy to work with me in the future on which medications, or combinations of medications, would be the best next step. Needless to say, when Jim and I left that appointment we were just so relieved that the first step was over and that we felt very comfortable that our decision to go to Boston was the right one.
So now I do have a little time to be my normal self for a while. We have a rather busy weekend planned with family and friends, so we'll have some time to think of other things besides cancer and treatments. It'll be good to have some down-time! I'll probably say this at the end of each blog, but thank you all so much for your support, prayers and love. Each card or message means the world to me and is definitely helping to carry me through this time.
Love you all!!!! Linda
Wednesday, September 26, 2007
This looks like the place
It's Wednesday morning, and we're still digesting all the information we received yesterday at Beth Israel in Boston. We began at 4:15p and didn't finish until 6:45. During that time we met with two nurse coordinators, Dr. Glotzbecker, and Dr. Atkins. While we were there they even reviewed the Cat Scans. Dr. Atkins is the Director of the Biologic Therapy program, and was without a doubt the most knowledgable doctor we've met so far. The best news we heard was that the 5% complete response rate for IL-2 was old data and that the number is more like 10-12%. 1 out of 8 is better than 1 out of 20. Partial response rates are 20-25%.
He pulled no punches about other treatment options, and explained that IL-2 was our best bet. He also explained that they are experimenting with combinations of drugs like Sutent and Avastin and how thet show promising results. They have a separate wing for their IL-2 patients, and they do 4 each week, and 95% of their patients complete the whole course of injections (3/day for 5 days). We see one more doctor today in Cincinnati, but we're comfortable that we've found the right place.
As we write this, we are having breakfast with Fran and Jeff Tarvin, whom we stayed with last night. Thanks Jeff, Thanks Fran, for your wonderful hospitality and friendship. We feel truly blessed. Gotta run, we'll write more later.
Love, Linda and Jim
He pulled no punches about other treatment options, and explained that IL-2 was our best bet. He also explained that they are experimenting with combinations of drugs like Sutent and Avastin and how thet show promising results. They have a separate wing for their IL-2 patients, and they do 4 each week, and 95% of their patients complete the whole course of injections (3/day for 5 days). We see one more doctor today in Cincinnati, but we're comfortable that we've found the right place.
As we write this, we are having breakfast with Fran and Jeff Tarvin, whom we stayed with last night. Thanks Jeff, Thanks Fran, for your wonderful hospitality and friendship. We feel truly blessed. Gotta run, we'll write more later.
Love, Linda and Jim
Monday, September 24, 2007
If it's not one thing, it's another...
We just got back from the breast biopsy surgery and the diagnosis was "duct carcinoma in situ with microinvasive disease". It probably sounds worse than it is because the surgeon said that it was a tiny site and she felt that she had excised all the surrounding tissue. She referred to it as stage 1 and said that the odds of it spreading were only 1-2%. She said that she would normally have recommended radiation and removal of a lymph node for examination. But given the circumstances, this is the least of the problems right now. She said to continue looking into the treatments for renal cell carcinoma (RCC) and to come back in 6 months to see her. We just feel like it could have been a lot worse.
We also had a chance to talk yesterday with an RCC survivor ( a veterinarian from Texas) of 4 years who has lived with metastisis for the past 3 years. He's been on 7 different medications, including two that we had not heard of before. They were for small cell lung cancers that weren't mentioned in the RCC websites we've looked at. Except for his IL2 treatment he has been able to continue working throughout his treatments. We thought that was encouraging news!
Tomorrow we are off to Boston to look into the feasability of the IL2 treatments for me. If we choose this option it means several more trips to Boston (which I've never seen before!). We'll keep you updated after our visit tomorrow.
Love you all! Thanks for keeping me in your thoughts and prayers.
Linda and Jim
We also had a chance to talk yesterday with an RCC survivor ( a veterinarian from Texas) of 4 years who has lived with metastisis for the past 3 years. He's been on 7 different medications, including two that we had not heard of before. They were for small cell lung cancers that weren't mentioned in the RCC websites we've looked at. Except for his IL2 treatment he has been able to continue working throughout his treatments. We thought that was encouraging news!
Tomorrow we are off to Boston to look into the feasability of the IL2 treatments for me. If we choose this option it means several more trips to Boston (which I've never seen before!). We'll keep you updated after our visit tomorrow.
Love you all! Thanks for keeping me in your thoughts and prayers.
Linda and Jim
Saturday, September 22, 2007
Update for Sept 22nd
Hi, all!
It's me again! There isn't a whole lot of news to report, but I wanted to let you know about our trip to UC yesterday. Long story short, the doctor there is just starting a study combining Sutent with a new medication AMG 286. It's sponosored by a drug company and I would be the first UC patient in the study. Also, no one is being administered IL2 right now at UC, so I would be the only one to do it there. We were not too impressed, but the doctor did tell us that Dr. Atkins in Boston was like "Mr IL2", so it made us feel better about the decision to go up there on Tuesday.
The pace around here has slowed a little, mainly because you can't call doctors' offices on the weekends!! So we're just waiting for Monday to come when we start the hectic schedule of appointments next week.
Thanks so much to all of you who have done research or given us connections to others who have gone through this same ordeal. We're in the process of contacting some of these people and hope to find out more about treatments of the disease and their experiences.
Thanks, too, for all of the calls and cards. I'm overwhelmed by everyone's support and love and prayers.
Love ya all!!! Linda
It's me again! There isn't a whole lot of news to report, but I wanted to let you know about our trip to UC yesterday. Long story short, the doctor there is just starting a study combining Sutent with a new medication AMG 286. It's sponosored by a drug company and I would be the first UC patient in the study. Also, no one is being administered IL2 right now at UC, so I would be the only one to do it there. We were not too impressed, but the doctor did tell us that Dr. Atkins in Boston was like "Mr IL2", so it made us feel better about the decision to go up there on Tuesday.
The pace around here has slowed a little, mainly because you can't call doctors' offices on the weekends!! So we're just waiting for Monday to come when we start the hectic schedule of appointments next week.
Thanks so much to all of you who have done research or given us connections to others who have gone through this same ordeal. We're in the process of contacting some of these people and hope to find out more about treatments of the disease and their experiences.
Thanks, too, for all of the calls and cards. I'm overwhelmed by everyone's support and love and prayers.
Love ya all!!! Linda
Friday, September 21, 2007
The Second Update--Sept 20, 07
Family and friends,
Phone calls and research have been going fast and furious lately, so we thought we’d give you an update of how things are going so far. We have an appointment with the breast surgeon tomorrow for a follow-up mammogram and with an Oncologist at UC on Friday. Next Wednesday, we have an appointment with a urological oncologist who prescribes IL-2 treatments at Christ Hospital. There’s a lot of fact-finding to do. If any of you know someone going through this same thing or have additional information on treatments (in the U.S. and abroad) please feel free to share. In the meantime, Linda continues to feel well. She even played a full set of tennis today! Thanks for your on-going support and prayers.
Love,
Jim, Linda, Tony, and Andrea
Phone calls and research have been going fast and furious lately, so we thought we’d give you an update of how things are going so far. We have an appointment with the breast surgeon tomorrow for a follow-up mammogram and with an Oncologist at UC on Friday. Next Wednesday, we have an appointment with a urological oncologist who prescribes IL-2 treatments at Christ Hospital. There’s a lot of fact-finding to do. If any of you know someone going through this same thing or have additional information on treatments (in the U.S. and abroad) please feel free to share. In the meantime, Linda continues to feel well. She even played a full set of tennis today! Thanks for your on-going support and prayers.
Love,
Jim, Linda, Tony, and Andrea
The First Update--Sept 17, 07
Hi everyone. This is our first update on Linda’s status. For those of you who don’t know, we found out last week through follow-up testing that Linda’s renal cell carcinoma had spread to her lungs and renal cavity (space from which her kidney was removed). The spots on her lungs are numerous and mostly small. Due to the kidney’s impurity-filtering function, renal cancer cells do not respond to chemotherapy. There are two relatively new treatment options for this type of cancer. One involves medication that can limit the growth or reduce the size of the lesions in the lungs. Another type of treatment called rIL-2 is more intensive and has a small chance of having a positive affect but also a small chance (5%) of curing the disease. We are exploring these two options with several doctors and are researching whether other types of treatment may exist.
Today we found out the results of the brain MRI. The MRI was clear—there were no visible tumors on the brain! This came as quite a relief, as it means that we can proceed with treatment on the lungs rather than with radiation on the brain. Dr. Schroeder, the only Oncologist we’ve been able to see so far, will call his contacts at the Cleveland Clinic tonight or tomorrow, and see if they have any additional recommendations.
Thanks to all of you for keeping us in your thoughts and prayers. We hope to have more positive news as time progresses and we will keep all of you updated.
Love,
Jim, Linda, Tony, and Andrea
Today we found out the results of the brain MRI. The MRI was clear—there were no visible tumors on the brain! This came as quite a relief, as it means that we can proceed with treatment on the lungs rather than with radiation on the brain. Dr. Schroeder, the only Oncologist we’ve been able to see so far, will call his contacts at the Cleveland Clinic tonight or tomorrow, and see if they have any additional recommendations.
Thanks to all of you for keeping us in your thoughts and prayers. We hope to have more positive news as time progresses and we will keep all of you updated.
Love,
Jim, Linda, Tony, and Andrea
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