Finally! An appointment with Dr. Corn at MD Anderson. Friday, June 8 at 9AM! Ashley will drive in so George, Ashley and I will all be in town.
I know there are lots of family and friends to see during this trip, and I thought I would be clever and put up a public calendar that anyone could add to ... but Google calendars seems to be giving me trouble in making the calendar public so anyone can post. So go ahead and send me e-mail and I will put my schedule together. Or I will spend some time tomorrow on the phone arranging things.
Looking forward to see everybody and even more to getting this show on the road!
Wednesday, May 23, 2012
Friday, May 18, 2012
May 18 ... Coasting Along
Been a while since the last post and most of the time has been spent either waiting or haranguing docs and their assistants. Have I mentioned how much I hate phone tag? Especially when someone's message says they will return calls within 24 hours and then you never hear from them! Why don't these people learn to manage expectations? Tell me you won't return my call for two days then I'll be pleasantly surprised when you call back in one day. It's one of my pet peeves and those of you who have ever worked for me or with me remember me lecturing about phone call returns. Geez!!
But I do have some wheels turning. Kelly, Dr. Lee's medical assistant, is supposed to have faxed the appropriate medical records to Pat at MD Anderson yesterday. Pat did a good job of managing expectations by telling me it could take a couple of days to get an appointment set once she had the records. And she gave me her direct phone line so I could call and see if the fax made it. Now that's how to handle a client/customer/patient!
I am still waiting to see Dr. Morris, the surgeon here. I spoke with Kelly yesterday and she said that she is still waiting for Dr. Lee to give her the OK for the referral. Don't know exactly what is holding him up. Whether he is busy or reluctant. But the result is the same ... I wait. If I get in at MD Anderson, this one isn't as important to me, so I'm not stressing over it as much. But still frustrating.
George found a clinical trial going on in Scottsdale (http://clinicaltrials.gov/ct2/show/NCT01300533) ... I will likely e-mail them today for more information. Although it is a phase I trial and they are just trying to determine toxicity and dose levels, it might be something to consider. Need more info though.
The week has gone by slowly and depressingly. I want things to move along quickly and they aren't. Thank heavens I have this cruise to look forward to. If Melissa is reading this, I don't know what my recurrence means for the opportunity to be a cruise escort, but I am still very interested. We will have to talk on the cruise.
Kate and Mark will be on the cruise as well. It will be great to see some familiar faces and have the distraction of not thinking about cancer for an entire week. I will take my laptop and blog of course, but it will be about cruising and Alaska.
Thanks to all who have written or called or posted on Facebook that they are praying for me. Although I am not a religious person, I am very spiritual and I believe I can feel the prayers and good thoughts supporting me. I really, really appreciate all of you!
But I do have some wheels turning. Kelly, Dr. Lee's medical assistant, is supposed to have faxed the appropriate medical records to Pat at MD Anderson yesterday. Pat did a good job of managing expectations by telling me it could take a couple of days to get an appointment set once she had the records. And she gave me her direct phone line so I could call and see if the fax made it. Now that's how to handle a client/customer/patient!
I am still waiting to see Dr. Morris, the surgeon here. I spoke with Kelly yesterday and she said that she is still waiting for Dr. Lee to give her the OK for the referral. Don't know exactly what is holding him up. Whether he is busy or reluctant. But the result is the same ... I wait. If I get in at MD Anderson, this one isn't as important to me, so I'm not stressing over it as much. But still frustrating.
George found a clinical trial going on in Scottsdale (http://clinicaltrials.gov/ct2/show/NCT01300533) ... I will likely e-mail them today for more information. Although it is a phase I trial and they are just trying to determine toxicity and dose levels, it might be something to consider. Need more info though.
The week has gone by slowly and depressingly. I want things to move along quickly and they aren't. Thank heavens I have this cruise to look forward to. If Melissa is reading this, I don't know what my recurrence means for the opportunity to be a cruise escort, but I am still very interested. We will have to talk on the cruise.
Kate and Mark will be on the cruise as well. It will be great to see some familiar faces and have the distraction of not thinking about cancer for an entire week. I will take my laptop and blog of course, but it will be about cruising and Alaska.
Thanks to all who have written or called or posted on Facebook that they are praying for me. Although I am not a religious person, I am very spiritual and I believe I can feel the prayers and good thoughts supporting me. I really, really appreciate all of you!
Saturday, May 12, 2012
May 12 ... Options, options, options
Yesterday was very busy and informative. Met with a radiation oncologist at UNMH and found out everything we wanted to know (plus some) about tomotherapy.
First, he agrees that surgery is still the best bet. And strongly agreed with the trip to Houston to talk to folks there and see if I can find a surgeon who will work on me.
That being said, we found out some very good news about tomotherapy. Although we have heard over and over, and read many times, that kidney cancer is specifically resistant to radiation, he says "anything can be killed if you hit it hard enough".!! The problem with kidney cancer is that it takes more radiation to kill it than other types of cancer and it typically occurs in areas where there are other vital organs that would be too damaged by the radiation it takes to kill the cancer.
But in my case ... the tumors are not close to the small intestine and bowel, which means they can hit them with more radiation and tomotherapy is a much more focused delivery of the radiation, so the damage to surrounding tissue is much less. This means they can hit them with plenty of radiation without killing the surrounding vital organs (and me!). He gives tomotherapy a 50% chance of killing the tumors off completely! That's VERY different that what we have understood in the past. It's good to talk with an expert.
He described the therapy ... ideally 20 sessions, 20-30 mins each, once a day Mon-Fri. So that's 4 weeks of radiation therapy. Major side effects are nausea and fatigue. He could be ready to start whenever we are, but encouraged the visit to Houston, since this is slow-growing and I have some time to decide.
Then we went upstairs to the oncologist's office. I have been talking with his office manager about the referrals to MD Anderson and a surgeon here. Finally caught her (Kelly) face to face. She is very nice and extremely helpful. She went and tracked down Dr. Lee to find out that my e-mails to him had landed in his spam folder (go figure). So she is arranging the appointment with the local surgeon. She also called MD Anderson right then to find out that, since I am a former patient, with a medical record number, I can call and get my own appointment. It was after 5PM in Houston by the time we got home, so I will be calling them first thing Monday morning.
I feel so much better. We are moving along the data gathering path and seem to have some options that hold out a little hope.
First, he agrees that surgery is still the best bet. And strongly agreed with the trip to Houston to talk to folks there and see if I can find a surgeon who will work on me.
That being said, we found out some very good news about tomotherapy. Although we have heard over and over, and read many times, that kidney cancer is specifically resistant to radiation, he says "anything can be killed if you hit it hard enough".!! The problem with kidney cancer is that it takes more radiation to kill it than other types of cancer and it typically occurs in areas where there are other vital organs that would be too damaged by the radiation it takes to kill the cancer.
But in my case ... the tumors are not close to the small intestine and bowel, which means they can hit them with more radiation and tomotherapy is a much more focused delivery of the radiation, so the damage to surrounding tissue is much less. This means they can hit them with plenty of radiation without killing the surrounding vital organs (and me!). He gives tomotherapy a 50% chance of killing the tumors off completely! That's VERY different that what we have understood in the past. It's good to talk with an expert.
He described the therapy ... ideally 20 sessions, 20-30 mins each, once a day Mon-Fri. So that's 4 weeks of radiation therapy. Major side effects are nausea and fatigue. He could be ready to start whenever we are, but encouraged the visit to Houston, since this is slow-growing and I have some time to decide.
Then we went upstairs to the oncologist's office. I have been talking with his office manager about the referrals to MD Anderson and a surgeon here. Finally caught her (Kelly) face to face. She is very nice and extremely helpful. She went and tracked down Dr. Lee to find out that my e-mails to him had landed in his spam folder (go figure). So she is arranging the appointment with the local surgeon. She also called MD Anderson right then to find out that, since I am a former patient, with a medical record number, I can call and get my own appointment. It was after 5PM in Houston by the time we got home, so I will be calling them first thing Monday morning.
I feel so much better. We are moving along the data gathering path and seem to have some options that hold out a little hope.
Wednesday, May 9, 2012
May 9 - Chronic disease
Yesterday I remembered a conversation we had with one of my docs when I was first diagnosed. He said that we should look at kidney cancer as something we would never "cure", but that we could "manage", like diabetes.I think that's where my thought processes are taking me currently. I am still trying to wrap my head around the strong possibility that this latest tumor is inoperable. But I can treat it and make it manageable. I am lucky that kidney cancer has no overt symptoms. So I could live with this in me for quite some time, as long as we can keep it from growing and spreading. That's where my thoughts are taking me today.
Tuesday, May 8, 2012
May 8 - Getting along
Today will be a day for knitting. I spent way too much time yesterday lost in the World of Warcraft and need to get back to my real life (tho' it is a great escape!). I have the afghan to finish for a PEO sister and have a PEO meeting tonight to prepare for. Just living my life.
Have given the news of the recurrence to just about everybody. Once again, I am overwhelmed at the outpouring of love, good thoughts, and prayers that are coming my way. I am so blessed to have such a supportive circle of friends and family. I will ask now that some of that support be directed to George. He is having a rough time of it. Of course, he doesn't want to talk with anyone, but I do worry that he keeps it all inside. If you are in Albuquerque, call and ask him to meet for coffee. If elsewhere, send him an e-mail just to chat. I know he will appreciate it.
I'll post pictures of the babies and the afghan soon!
Have given the news of the recurrence to just about everybody. Once again, I am overwhelmed at the outpouring of love, good thoughts, and prayers that are coming my way. I am so blessed to have such a supportive circle of friends and family. I will ask now that some of that support be directed to George. He is having a rough time of it. Of course, he doesn't want to talk with anyone, but I do worry that he keeps it all inside. If you are in Albuquerque, call and ask him to meet for coffee. If elsewhere, send him an e-mail just to chat. I know he will appreciate it.
I'll post pictures of the babies and the afghan soon!
Monday, May 7, 2012
May 7 - Back on the Rollercoaster
Saw Dr. Lee this morning. I had posted to FB that I was feeling a little spooky about this visit. Sure enough, the cancer is back. He showed us CT images going back 4 years. You can barely see something developing across time, if you are very carefully looking. Then, this year's scan showed a 1" tumor in the nephrectomy bed. There's a smaller tumor along side it.
So, what does this mean? First it means Dr. Heywood was right when he said he was fairly certain this cancer would recur. He took some tissue samples at the last surgery and the histology said there were still a few little cancer cells floating around.
The docs at MD Anderson also said "when" this cancer recurs, not "if". Looks like they were right.
There are several options. My preference, as most of you know, is surgery. As my friend Rose-Ann says ... When in doubt, cut it out. ... But this one is positioned very poorly. VERY close to a major vessel and right up against the posterior abdominal wall. The concern is that surgery would damage the blood vessel, which would be very bad and/or the proximity to the abdominal wall makes it almost impossible to get clear margins without damaging the wall.
So surgery is not a first option. Next best is tomotherapy. Much like a CT scan, this process focuses the radiation very tightly on the tumor. Now, I know you have heard me say that kidney cancer is specifically resistant to chemo and radiation. The best they can hope to do with tomotherapy is create scar tissue around the tumor, which will limit its growth and slow blood flow to it (also limiting its growth). Major side effect is extreme fatigue. Would be treated daily for a couple to three weeks. Could buy me a few years.
Next possibility is an oral therapy called an M-TOR inhibitor. Have lots to look up and learn about this one. Lee says it will shrink the tumor without cardiac side-effects of other oral therapies. Not chemo therapy, but close. Major side effect is mouth ulcers, which Lee described as "craters".
There's also about a 2.5% chance of spontaneous remission. Not counting on this one.
The high-dose IL-2 that was an option last time is not being recommended much any more because the quality of the success is not good. That means recurrences are almost guaranteed. And I believe it isn't very effective unless the tumor is in the lungs. I'll have to look that one up.
So ...
I have an appt with a radiation oncologist on Friday to learn more about the tomotherapy. I have sent Dr. Lee the name of the oncologist I saw in Houston several years ago and I will be making a trip to MD Anderson soon for their opinion on treatment options. Perhaps they will have a more aggressive surgeon or have some other radiation or oral therapy available or in clinical trials.
As I did last time I was going through this, I will post here as many details as I can and as soon as I know them. Keeps me from having to talk about this all the time and answer countless questions. Lets me get on with my life.
Thank all of you in advance for all the wonderful thoughts and prayers that I know will be coming my way. I could certainly feel them last time and I know they will be a great comfort to me this time.
Oh, and I'm still going on my Alaska cruise the end of this month! Can't keep a good cruiser down!
So, what does this mean? First it means Dr. Heywood was right when he said he was fairly certain this cancer would recur. He took some tissue samples at the last surgery and the histology said there were still a few little cancer cells floating around.
The docs at MD Anderson also said "when" this cancer recurs, not "if". Looks like they were right.
There are several options. My preference, as most of you know, is surgery. As my friend Rose-Ann says ... When in doubt, cut it out. ... But this one is positioned very poorly. VERY close to a major vessel and right up against the posterior abdominal wall. The concern is that surgery would damage the blood vessel, which would be very bad and/or the proximity to the abdominal wall makes it almost impossible to get clear margins without damaging the wall.
So surgery is not a first option. Next best is tomotherapy. Much like a CT scan, this process focuses the radiation very tightly on the tumor. Now, I know you have heard me say that kidney cancer is specifically resistant to chemo and radiation. The best they can hope to do with tomotherapy is create scar tissue around the tumor, which will limit its growth and slow blood flow to it (also limiting its growth). Major side effect is extreme fatigue. Would be treated daily for a couple to three weeks. Could buy me a few years.
Next possibility is an oral therapy called an M-TOR inhibitor. Have lots to look up and learn about this one. Lee says it will shrink the tumor without cardiac side-effects of other oral therapies. Not chemo therapy, but close. Major side effect is mouth ulcers, which Lee described as "craters".
There's also about a 2.5% chance of spontaneous remission. Not counting on this one.
The high-dose IL-2 that was an option last time is not being recommended much any more because the quality of the success is not good. That means recurrences are almost guaranteed. And I believe it isn't very effective unless the tumor is in the lungs. I'll have to look that one up.
So ...
I have an appt with a radiation oncologist on Friday to learn more about the tomotherapy. I have sent Dr. Lee the name of the oncologist I saw in Houston several years ago and I will be making a trip to MD Anderson soon for their opinion on treatment options. Perhaps they will have a more aggressive surgeon or have some other radiation or oral therapy available or in clinical trials.
As I did last time I was going through this, I will post here as many details as I can and as soon as I know them. Keeps me from having to talk about this all the time and answer countless questions. Lets me get on with my life.
Thank all of you in advance for all the wonderful thoughts and prayers that I know will be coming my way. I could certainly feel them last time and I know they will be a great comfort to me this time.
Oh, and I'm still going on my Alaska cruise the end of this month! Can't keep a good cruiser down!
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